After much thinking and procrastinating I have finally decided to move this blog to a new place in the World Wide Web......... nspip.com.
This site within the blogger world will remain active for a while to let everyone adjust to the new location and update any bookmarks.
Come on over to the new site and check it out. The entire archive of previous blog posts has been moved. I am trying out tags and categories if you are trying to find specific information.
As I adjust to the new site you may see a few changes and any suggestions are welcome.....I may not always listen though 😉
Wednesday, 1 February 2017
Wednesday, 18 January 2017
Move Over Wheaties
There's a new breakfast of champions......
And this is what a week looks like.......
I started my new treatment, Capecitabine, last Wednesday evening. It is 7 pills with food morning and evening. The doses are supposed to be 12 hours apart but that is a little tricky as I am not about to start having breakfast at 7 am. The current plan is a 3 week cycle, 2 weeks of pills then a week of no pills.
The fun will increase when I add Lapatinib to the regimen. Five pills either an hour before or an hour after a low-fat meal. And I'm supposed to take it at the same time every day. Hmmm.
I'm not giving up good breakfasts or good dinners so neither of those meals work. I guess that means pills with lunch......except I'm too inactive so I don't eat lunch very often. Lunch of celery here I come.
I have known several people that have been on Capecitabine. Many have had a lot of trouble with side effects, in particular hand and foot syndrome and mouth sores. Because of all the potential problems with side effects the plan is to figure out my Capecitabine side effects with this 1st cycle and determine the best dose for me.
We can do all kinds of dose adjustments as the pills are 2 sizes, 500 mg and 150 mg. I am currently on 1750 mg per dose. If necessary that can get dropped to as low as 1000 mg per dose or anywhere in between. The cycle can also be changed. I know of people that have done 1 week on, 1 week off. There is so much more flexibility with pills instead of iv dosing.
With the Capecitabine dose under control the Lapatinib will be added with cycle 2. The two drugs in combination can create a whole new side effect monster. Apparently I could get angina or heart failure but I will hope for the best. There's a rare genetic mutation that makes a person unable to process Capecitabine causing them to almost immediately experience the most extreme versions of all the major possible side effects of the drug yet getting no positive cancer killing effects. Sounded peachy. I didn't have that so I'm really hopeful I won't have a massive heart attack or anything when I start the Lapatinib.
I am now one week into my 1st Capecitabine cycle and I haven't experienced any side effects. I know that side effects can increase as the amount of drug in my system increases but the no side effect thing freaks me out. Am I just taking a mouthful of placebos twice a day? I have always felt that having side effects is just a little confirmation that, yes, I am taking the right drug.
If anything this morning I had this vague sensation that the neuropathy in my left hand was slightly better than it has been for a while. WTH????
The other, more obvious way to tell if I am taking the right drug is that there is improvement in my symptoms. There might be? Maybe? IDK.
Well, I guess slightly, perhaps. I can sleep in bed again. I don't have to be mostly upright on the couch. That is good. And I can even sleep on my side for a little while if I prop up my fat arm a bit.
The bumps seem to be decreasing in some areas but I think they may still be spreading slightly in other areas. I took some pictures a couple days ago and I will take more in a week and compare them. That will give a definite answer to how much, if any, change there is.
The pictures made me think of a pale elephant with small pox 😱
So for now, the official report is......on a new treatment. Still alive.
And this is what a week looks like.......
I started my new treatment, Capecitabine, last Wednesday evening. It is 7 pills with food morning and evening. The doses are supposed to be 12 hours apart but that is a little tricky as I am not about to start having breakfast at 7 am. The current plan is a 3 week cycle, 2 weeks of pills then a week of no pills.
The fun will increase when I add Lapatinib to the regimen. Five pills either an hour before or an hour after a low-fat meal. And I'm supposed to take it at the same time every day. Hmmm.
I'm not giving up good breakfasts or good dinners so neither of those meals work. I guess that means pills with lunch......except I'm too inactive so I don't eat lunch very often. Lunch of celery here I come.
I have known several people that have been on Capecitabine. Many have had a lot of trouble with side effects, in particular hand and foot syndrome and mouth sores. Because of all the potential problems with side effects the plan is to figure out my Capecitabine side effects with this 1st cycle and determine the best dose for me.
We can do all kinds of dose adjustments as the pills are 2 sizes, 500 mg and 150 mg. I am currently on 1750 mg per dose. If necessary that can get dropped to as low as 1000 mg per dose or anywhere in between. The cycle can also be changed. I know of people that have done 1 week on, 1 week off. There is so much more flexibility with pills instead of iv dosing.
With the Capecitabine dose under control the Lapatinib will be added with cycle 2. The two drugs in combination can create a whole new side effect monster. Apparently I could get angina or heart failure but I will hope for the best. There's a rare genetic mutation that makes a person unable to process Capecitabine causing them to almost immediately experience the most extreme versions of all the major possible side effects of the drug yet getting no positive cancer killing effects. Sounded peachy. I didn't have that so I'm really hopeful I won't have a massive heart attack or anything when I start the Lapatinib.
I am now one week into my 1st Capecitabine cycle and I haven't experienced any side effects. I know that side effects can increase as the amount of drug in my system increases but the no side effect thing freaks me out. Am I just taking a mouthful of placebos twice a day? I have always felt that having side effects is just a little confirmation that, yes, I am taking the right drug.
If anything this morning I had this vague sensation that the neuropathy in my left hand was slightly better than it has been for a while. WTH????
The other, more obvious way to tell if I am taking the right drug is that there is improvement in my symptoms. There might be? Maybe? IDK.
Well, I guess slightly, perhaps. I can sleep in bed again. I don't have to be mostly upright on the couch. That is good. And I can even sleep on my side for a little while if I prop up my fat arm a bit.
The bumps seem to be decreasing in some areas but I think they may still be spreading slightly in other areas. I took some pictures a couple days ago and I will take more in a week and compare them. That will give a definite answer to how much, if any, change there is.
The pictures made me think of a pale elephant with small pox 😱
So for now, the official report is......on a new treatment. Still alive.
Tuesday, 10 January 2017
Come back 2016
I'm sorry, 2016, you weren't so bad. Can't we just pretend the last 10 days didn't happen and go back a year? 🙈 (This is new in Blogger, they finally have emojis......or maybe it is just that I'm using Windows 10 rather than an ancient Mac. Apparently this is face with look of triumph 😤. I always thought it was super angry face. Hmmmmm.)
Right, back to this whole 💩 2017 thing.......
Last....Wednesday?.....maybe Tuesday, yes, Tuesday, my amazing elephant arm seemed to be a little more swollen than it had been. It does go up and down a little bit, but it seemed worse then it had been for a few days.
On Wednesday evening I noticed a few bumps on the front of my right shoulder. Being an optimistic sort I thought that perhaps because the general inflammation in my shoulder and around my collar bone had gone down the bumps had always been there but they had been masked by the inflammation. But, my arm was definitely more swollen than it had been and was beginning to ache and feel very heavy. Pretty much how it felt in October when my last treatment failed.
On Thursday to get away from it all I spent a lovely afternoon at the movies with my aunt. We saw Why Him? starring Bryan Cranston of Breaking Bad. It turned out to be a Christmas movie which I appreciated as I love the Christmas season and I'm always sad when it ends. In a way it felt a bit like an updated version of National Lampoon's Christmas Vacation, my all time favourite Christmas movie. It doesn't contain the cleanest jokes, but I will admit I laughed so hard at one point I snorted. And if anyone hears of fully automated Japanese toilets let me know. I really want to get me one.
By Saturday the mobility of my right shoulder had decreased dramatically, the bumps on my shoulder had spread, and my arm was the most swollen it has ever been. At that point I decided to email my oncologist to give her a heads up. I had an appointment with a sub oncologist Monday morning but I thought my regular onc would want the warning that it looks like I am already dealing with a failed treatment.
It has been very uncomfortable trying to sleep. I need to keep it supported or my shoulder pulls in the most awkward way. I had a CT scan yesterday afternoon on my pelvis, abdomen, and neck. It had been booked for a while....it was supposed to show how wonderful I was doing on the TDM-1 instead I'm pretty sure it will show progression. Poo......or should I say 💩
Last night I noticed that any pressure of my right arm against my ribs was unpleasant. This afternoon I found new lump above my ribs. I have this feeling that I have a sore throat, I really hope I am not getting a cold that could interfere with my treatment, but it is possible the sensation is from the large lymph node I can now feel right above my collar bone.
This is when I feel obligated to quote my first crush, Johnny Castle. Mmmmmm......well, my first crush after Maverick (I suppose I could have picked Danger Zone but I haven't heard the theme song for ages) , and Craig's grade 5 teacher, Mr. Gilchrist. Oh and that boy in my grade 2 class at Pebble Hill in Tsawwassen. I think I might still remember his name but I'm not telling any of you who it was, that would be just a little too mortifying.
And my real first ever crush:
Last month I'm eating ju ju beans to stay alive.
This month, women are stuffing diamonds in my
pockets. I'm balancing on shit and just like that
I can be down there again.
Not a totally relevant quote but it continues the 💩 theme.
Patrick Swayze died of pancreatic cancer in 2009. While he was on treatment he filmed one season of a tv show called The Beast. I don't remember much about it other than Ian and I both enjoyed watching it. If you need something to watch it is worth a look.
Tomorrow morning I have a brain MRI then I have an appointment with my oncologist. We are both expecting me to move to a new treatment. It really sucks that I burned through a less toxic treatment in less than 2 months.
The next treatment will probably be Capecitabine, a pill form of chemo. It is odd to think that for the first time in 4 and a half years I won't be on the chemo ward every 3 weeks. It does add more flexibility to my life but I will probably miss the place. There is the possibility that I won't lose my hair but there is a fairly big risk of hand and foot syndrome that can cause neuropathy, redness, and blistering of my hands and feet. That doesn't sound fun, but it would be better than what I'm currently dealing with my arm.
That is all for now. I'll be back once I have my life sorted out a bit more.
Right, back to this whole 💩 2017 thing.......
Last....Wednesday?.....maybe Tuesday, yes, Tuesday, my amazing elephant arm seemed to be a little more swollen than it had been. It does go up and down a little bit, but it seemed worse then it had been for a few days.
On Wednesday evening I noticed a few bumps on the front of my right shoulder. Being an optimistic sort I thought that perhaps because the general inflammation in my shoulder and around my collar bone had gone down the bumps had always been there but they had been masked by the inflammation. But, my arm was definitely more swollen than it had been and was beginning to ache and feel very heavy. Pretty much how it felt in October when my last treatment failed.
On Thursday to get away from it all I spent a lovely afternoon at the movies with my aunt. We saw Why Him? starring Bryan Cranston of Breaking Bad. It turned out to be a Christmas movie which I appreciated as I love the Christmas season and I'm always sad when it ends. In a way it felt a bit like an updated version of National Lampoon's Christmas Vacation, my all time favourite Christmas movie. It doesn't contain the cleanest jokes, but I will admit I laughed so hard at one point I snorted. And if anyone hears of fully automated Japanese toilets let me know. I really want to get me one.
By Saturday the mobility of my right shoulder had decreased dramatically, the bumps on my shoulder had spread, and my arm was the most swollen it has ever been. At that point I decided to email my oncologist to give her a heads up. I had an appointment with a sub oncologist Monday morning but I thought my regular onc would want the warning that it looks like I am already dealing with a failed treatment.
It has been very uncomfortable trying to sleep. I need to keep it supported or my shoulder pulls in the most awkward way. I had a CT scan yesterday afternoon on my pelvis, abdomen, and neck. It had been booked for a while....it was supposed to show how wonderful I was doing on the TDM-1 instead I'm pretty sure it will show progression. Poo......or should I say 💩
Last night I noticed that any pressure of my right arm against my ribs was unpleasant. This afternoon I found new lump above my ribs. I have this feeling that I have a sore throat, I really hope I am not getting a cold that could interfere with my treatment, but it is possible the sensation is from the large lymph node I can now feel right above my collar bone.
This is when I feel obligated to quote my first crush, Johnny Castle. Mmmmmm......well, my first crush after Maverick (I suppose I could have picked Danger Zone but I haven't heard the theme song for ages) , and Craig's grade 5 teacher, Mr. Gilchrist. Oh and that boy in my grade 2 class at Pebble Hill in Tsawwassen. I think I might still remember his name but I'm not telling any of you who it was, that would be just a little too mortifying.
And my real first ever crush:
And those uniforms were pretty stellar, too! (For anyone not up on Vancouver Canucks history that is Richard Brodeur, King Richard, the Canucks goalie during the 1982 run for the Cup.)
Ok, now that we have done that little trip down memory lane, back to the point I was making about quoting Johnny Castle 💘 One of the things that MBC patients (or anyone with a terminal disease) have to deal with is how to slot into regular life and make plans like regular people for the future. Not that we have to slot in anywhere, but as a part of living, and I really like doing that, it is pretty common to make plans for the future.....such as a trip to Australia next January, or a theatre show that won't be in town until fall while dealing with the reality of possibly being dead in 3 months. I guess no one really knows when they will go, but people with terminal illnesses generally have shorter life spans than people without terminal illnesses.
I am sure there are lots of quotes from lots of other movies I could use to prove this point but since I have been a Dirty Dancing fan for almost 30 years I'm going with this one.......
This month, women are stuffing diamonds in my
pockets. I'm balancing on shit and just like that
I can be down there again.
Not a totally relevant quote but it continues the 💩 theme.
Patrick Swayze died of pancreatic cancer in 2009. While he was on treatment he filmed one season of a tv show called The Beast. I don't remember much about it other than Ian and I both enjoyed watching it. If you need something to watch it is worth a look.
Tomorrow morning I have a brain MRI then I have an appointment with my oncologist. We are both expecting me to move to a new treatment. It really sucks that I burned through a less toxic treatment in less than 2 months.
The next treatment will probably be Capecitabine, a pill form of chemo. It is odd to think that for the first time in 4 and a half years I won't be on the chemo ward every 3 weeks. It does add more flexibility to my life but I will probably miss the place. There is the possibility that I won't lose my hair but there is a fairly big risk of hand and foot syndrome that can cause neuropathy, redness, and blistering of my hands and feet. That doesn't sound fun, but it would be better than what I'm currently dealing with my arm.
That is all for now. I'll be back once I have my life sorted out a bit more.
Saturday, 31 December 2016
So long 2016
What a year it has been......
I was on chemo when it started with all the joys that brings. I didn't have hair, I was permanently tired and for a reason when my hemoglobin dropped to 105 g/L. In January David Bowie and Holly Kitchen died. Everyone knows David Bowie the superstar, here's a link to one of my favourite songs.... Space Oddity. Holly Kitchen was famous as an advocate in the metastatic breast cancer world in part due to this video. Alan Rickman died......goodbye Professor Snape, you were one of the best characters in Harry Potter.
Then, one of the rooms in the Hotel California closed when Glenn Frye died.
I don't remember much about February which is probably a good thing. I was on chemo, I was bald, and I was tired. That seems like enough.
Chemo finally ended in March. The fatigue slowly improved as my hemoglobin went up but my energy level wasn't fantastic. At least my hair started to grow in. And there were some vague signs that the lesion on my skull was improving as I had few more good days than bad days but my taste buds and tongue were still not great.
My right arm got all puffy and at Easter weekend I was diagnosed with a blood clot in my right armpit. That resulted in 4 months of injecting myself daily with a blood thinner. Definitely not a highlight in my life.
Prince died in April. I would now post Raspberry Beret but apparently there is some kind of copyright thing going on so every link I found was being muted. How about listening to a few doves cry.
I had some scans and the CT and MRI looked good while the PET showed some questionable lymph nodes. Wait for a while and rescan seemed like a good plan.
And a really positive thing, Ian and I went to Mexico for a week........
Over the May long weekend we had a medical crisis with Jasper and we thought liver failure was the end. The night before an expensive test he decided he wasn't ready to go yet and he has been his crazy self ever since.
In June the world lost the amazing Muhammad Ali. Famous originally as a boxer that floated like a butterfly and stung like a bee he became known as a social activist......."Hating people because of their colour is wrong. And it doesn't matter which colour does the hating. It's just plain wrong."
"Service to others is the rent you pay for your time here on earth."
And one of the most important, "Live every day as if it was your last because someday you're going to be right."
We also lost the hockey legend, Gordie Howe.
July is mostly a blank. My energy level was still improving. My arm was still a little puffy but the blood clot was gone so at least I was done with the blood thinners. It was decided the puffiness was lymphadema so I was hopeful a few drainage exercises would clear it up. I had more scans and the CT and MRI were both good while the PET was still questionable.
Ian and I headed off to Toronto at the beginning of August with a side trip down to Skaneateles to see some of Ian's family. We made it to a Blue Jays game and the Jays crushed the Rays which was excellent for Ian's first experience at a major league ball game.
The weather was pretty stunning though with a heat wave rolling through. The humidity is positively horrible for lymphadema. I probably should have worn my compression sleeve all the time but it was so gross and hot and sticky I just couldn't do it.
Overall though, it was great to see all the family and it was a nice getaway from all the usual medical stuff.
September began in a mellow fashion, I was still tired from our travels and my arm stayed puffy. More scans were done near the end of the month and then all hell started to break loose. I started to notice some lumps and bumps on the right side and then my right arm ballooned. I got the scan results at the beginning of October and while they were still good things were continuing to go downhill. I had an elephant trunk for my right arm and the lumps and bumps were getting bigger and my skin was getting involved. I didn't realize it but my energy was completely disappearing and by the end of the month it was decided it was time for a new treatment.
In November I started TDM-1 and things have started to improve. Almost immediately I could feel the cancer cells dying and the lumps and bumps have been shrinking and my skin healing.
The Canadian music icon Leonard Cohen died.......Hallelujah but not really.
December has been crazy. Christmas baking was done, Irish Cream was made, stollen was baked, the lights put up, the tree decorated, the gifts wrapped, the family visited, the gifts opened, friends have been visited, and A LOT of food and drink has been consumed.
We said good bye to George Michael........time to keep the faith. And the Force weakened with the passing of Carrie Fisher followed quickly by her mother, Debbie Reynolds.
The world lost many other famous people throughout the year.......R2-D2 (Kenny Baker), Lady Chablis, Juan Fernandez, Robert Vaughn, Florence Henderson (I loved this show!), Alan Thicke (and this show!), George Gaynes, Patty Duke, Frank Sinatra Jr., Nancy Reagan, Vera Rubin, and the list goes on and on.
It is now 2 hours before 2017 starts. We have friends visiting to help us ring in the new year. We've had some sausage rolls and cheese fondue. We'll drink some wine, some of it sparkling, then at about 12:05 we'll head to bed.
Happy New Year! Best of wishes for 2017, may it be better than 2016!
I was on chemo when it started with all the joys that brings. I didn't have hair, I was permanently tired and for a reason when my hemoglobin dropped to 105 g/L. In January David Bowie and Holly Kitchen died. Everyone knows David Bowie the superstar, here's a link to one of my favourite songs.... Space Oddity. Holly Kitchen was famous as an advocate in the metastatic breast cancer world in part due to this video. Alan Rickman died......goodbye Professor Snape, you were one of the best characters in Harry Potter.
Then, one of the rooms in the Hotel California closed when Glenn Frye died.
I don't remember much about February which is probably a good thing. I was on chemo, I was bald, and I was tired. That seems like enough.
Chemo finally ended in March. The fatigue slowly improved as my hemoglobin went up but my energy level wasn't fantastic. At least my hair started to grow in. And there were some vague signs that the lesion on my skull was improving as I had few more good days than bad days but my taste buds and tongue were still not great.
My right arm got all puffy and at Easter weekend I was diagnosed with a blood clot in my right armpit. That resulted in 4 months of injecting myself daily with a blood thinner. Definitely not a highlight in my life.
Prince died in April. I would now post Raspberry Beret but apparently there is some kind of copyright thing going on so every link I found was being muted. How about listening to a few doves cry.
I had some scans and the CT and MRI looked good while the PET showed some questionable lymph nodes. Wait for a while and rescan seemed like a good plan.
And a really positive thing, Ian and I went to Mexico for a week........
Over the May long weekend we had a medical crisis with Jasper and we thought liver failure was the end. The night before an expensive test he decided he wasn't ready to go yet and he has been his crazy self ever since.
In June the world lost the amazing Muhammad Ali. Famous originally as a boxer that floated like a butterfly and stung like a bee he became known as a social activist......."Hating people because of their colour is wrong. And it doesn't matter which colour does the hating. It's just plain wrong."
"Service to others is the rent you pay for your time here on earth."
And one of the most important, "Live every day as if it was your last because someday you're going to be right."
We also lost the hockey legend, Gordie Howe.
July is mostly a blank. My energy level was still improving. My arm was still a little puffy but the blood clot was gone so at least I was done with the blood thinners. It was decided the puffiness was lymphadema so I was hopeful a few drainage exercises would clear it up. I had more scans and the CT and MRI were both good while the PET was still questionable.
Ian and I headed off to Toronto at the beginning of August with a side trip down to Skaneateles to see some of Ian's family. We made it to a Blue Jays game and the Jays crushed the Rays which was excellent for Ian's first experience at a major league ball game.
The weather was pretty stunning though with a heat wave rolling through. The humidity is positively horrible for lymphadema. I probably should have worn my compression sleeve all the time but it was so gross and hot and sticky I just couldn't do it.
Overall though, it was great to see all the family and it was a nice getaway from all the usual medical stuff.
September began in a mellow fashion, I was still tired from our travels and my arm stayed puffy. More scans were done near the end of the month and then all hell started to break loose. I started to notice some lumps and bumps on the right side and then my right arm ballooned. I got the scan results at the beginning of October and while they were still good things were continuing to go downhill. I had an elephant trunk for my right arm and the lumps and bumps were getting bigger and my skin was getting involved. I didn't realize it but my energy was completely disappearing and by the end of the month it was decided it was time for a new treatment.
In November I started TDM-1 and things have started to improve. Almost immediately I could feel the cancer cells dying and the lumps and bumps have been shrinking and my skin healing.
The Canadian music icon Leonard Cohen died.......Hallelujah but not really.
December has been crazy. Christmas baking was done, Irish Cream was made, stollen was baked, the lights put up, the tree decorated, the gifts wrapped, the family visited, the gifts opened, friends have been visited, and A LOT of food and drink has been consumed.
We said good bye to George Michael........time to keep the faith. And the Force weakened with the passing of Carrie Fisher followed quickly by her mother, Debbie Reynolds.
The world lost many other famous people throughout the year.......R2-D2 (Kenny Baker), Lady Chablis, Juan Fernandez, Robert Vaughn, Florence Henderson (I loved this show!), Alan Thicke (and this show!), George Gaynes, Patty Duke, Frank Sinatra Jr., Nancy Reagan, Vera Rubin, and the list goes on and on.
It is now 2 hours before 2017 starts. We have friends visiting to help us ring in the new year. We've had some sausage rolls and cheese fondue. We'll drink some wine, some of it sparkling, then at about 12:05 we'll head to bed.
Happy New Year! Best of wishes for 2017, may it be better than 2016!
Friday, 9 December 2016
TDM-1 #1
And TDM-1 #2 since I am completely behind :-P
I don't remember where I left off in my last post so a quick recap. All hell was breaking loose. There was a lump in my right breast, a mass in my right armpit, a lump in my shoulder, skin involvement in several spots which had even started to break through the skin so I had some open yucky sores, my right arm was totally swollen to my fingertips, and the motion in my shoulder was so limited I couldn't raise my arm to shoulder height.
On November 8th, yup THAT day, I had my first cycle of TDM-1, also known as kadcyla. (Last time I started a new treatment was on federal election day in Canada in 2015 so starting this treatment on election day in the U.S. seemed fitting.) My oncologist didn't have my final Her2 results yet but we decided that I was not going to be the first patient at the Victoria site of the BC Cancer Agency to go from triple positive to triple negative biomarkers so TDM-1 was the best choice of treatment.
For my first treatment the infusion ran for an hour and a half and then I had to wait through an hour and a half observation time. About half an hour into the observation time I felt a sharp little pain in my armpit. I felt a few more before the observation time was complete. I have had similar pains in the past, I think they are the final death throes of cancer cells. Either I was still Her2+ or I was having the Best. Placebo. Effect. Ever.
About an hour after getting home from treatment I received an email from my oncologist, I am still Her2+. Yay! That means not placebo effect, that was actual cancer cells dying. What a fabulous birthday present!
Over the next 5 days or so, including my birthday, I felt pretty much like crap. The primary side effect of TDM-1 is flu-like symptoms. I definitely had those. No energy and gross feeling. But lots of those wonderful little shooting pains of dying cancer cells.
Within a few days I was already seeing improvement in the skin lesions and the lump in my shoulder was shrinking. When 3 weeks was up and it was time for my 2nd dose of TDM-1 my energy level was the best it had been in months, the skin involvement was almost all healed, the lump in my breast had shrunk, the lump in my shoulder was gone, the mass in my armpit had shrunk, and the motion in my shoulder had improved significantly. My arm was still very swollen but I had noticed a little bit of improvement. I figure I will have to wait for the mass in my armpit to shrink a lot more before the lymph fluid can really start to drain.
In the midst of all of these fabulous changes I had a whirlwind weekend trip to Toronto for an advocacy workshop put on by the Canadian Breast Cancer Network. This is an organisation that has been very involved in patient education and advocacy. As I have not been volunteering since Ian and I moved to Victoria I thought it was time to make some new connections and find a new project.
The workshop was designed specifically for metastatic breast cancer and some of the most significant issues faced by MBC patients. One of the most important issues is access to drugs. We learned about the actual steps involved in a new drug getting Health Canada approval and then eventually reaching the market. It turns out that once a drug is Health Canada approved (which can take up to 2 years) it can take up to another 2 years before a drug may be accessible by patients. This is because each province has to go through its own process to work with a drug company on price and coverage.
For an MBC patient that has run out of treatment options waiting 4 years for a new drug is not feasible. I am fortunate that I am only on my 3rd treatment option and there are a few more still available. But, it would only take a few failed treatment regimens and I would be at the end of the line. Based on how rapidly my progression happened over the last couple months waiting 4 years for a drug is a death sentence. This is where advocacy comes in.
The goal of the drug access campaign is to ensure access to life saving drugs for MBC patients whenever they are needed. Right now, special access to not fully approved drugs can be achieved through a few different routes. New drugs are initially available to MBC patients during drug trials, often trials are only offered to MBC patients especially in the early stages. To give patients access the trials are occasionally artificially extended so patients that have been benefiting do not lose access while the drug is moving through the approval process. Sometimes a drug company will offer compassionate access to a drug so patients can remain on the treatment. And sometimes a province will be pressured to make the drug available before it has gone through the entire approval process.
While it is good these routes to a drug are available, none of the routes are automatically available. The onus is on a specific patient or a patient advocate to request this special access and even with the request it is not a guarantee that the patient will be approved or approved before it is too late.
It is essential that new drugs are made readily available to MBC patients every time they are needed, even before full approval by provincial health systems is complete.
And I'll jump off my soapbox now. ;-)
Back to me, since I'm really important to me......my 2nd dose of TDM-1 was uneventful. I was down to a half hour infusion and a half hour observation. And no problems were observed.
I had a few days of ick feeling after but overall no complaints. These are side effects I am happy to deal with. My lumps and bumps continue to shrink, maybe some day soon my elephant arm will shrink too. At least it doesn't feel like it weighs 20 pounds any more. It only feels heavy when I raise my arm above my head (woo hoo, I can raise my arm above my head!) which made putting up Christmas lights a bit of a challenge but I got it done. Christmas baking is done and most of my shopping. I don't think I have ever been this prepared this early for Christmas before. Next up is the tree.
We did get actual snow in Victoria. It really is a rare occurrence. Here are pictures for those of you not on Facebook:
Orchid is really enjoying the snow day.
It is 11 days until my next treatment. I'll try to post again after that, but if I'm too busy, Merry Christmas, everyone!
I don't remember where I left off in my last post so a quick recap. All hell was breaking loose. There was a lump in my right breast, a mass in my right armpit, a lump in my shoulder, skin involvement in several spots which had even started to break through the skin so I had some open yucky sores, my right arm was totally swollen to my fingertips, and the motion in my shoulder was so limited I couldn't raise my arm to shoulder height.
On November 8th, yup THAT day, I had my first cycle of TDM-1, also known as kadcyla. (Last time I started a new treatment was on federal election day in Canada in 2015 so starting this treatment on election day in the U.S. seemed fitting.) My oncologist didn't have my final Her2 results yet but we decided that I was not going to be the first patient at the Victoria site of the BC Cancer Agency to go from triple positive to triple negative biomarkers so TDM-1 was the best choice of treatment.
For my first treatment the infusion ran for an hour and a half and then I had to wait through an hour and a half observation time. About half an hour into the observation time I felt a sharp little pain in my armpit. I felt a few more before the observation time was complete. I have had similar pains in the past, I think they are the final death throes of cancer cells. Either I was still Her2+ or I was having the Best. Placebo. Effect. Ever.
About an hour after getting home from treatment I received an email from my oncologist, I am still Her2+. Yay! That means not placebo effect, that was actual cancer cells dying. What a fabulous birthday present!
Over the next 5 days or so, including my birthday, I felt pretty much like crap. The primary side effect of TDM-1 is flu-like symptoms. I definitely had those. No energy and gross feeling. But lots of those wonderful little shooting pains of dying cancer cells.
Within a few days I was already seeing improvement in the skin lesions and the lump in my shoulder was shrinking. When 3 weeks was up and it was time for my 2nd dose of TDM-1 my energy level was the best it had been in months, the skin involvement was almost all healed, the lump in my breast had shrunk, the lump in my shoulder was gone, the mass in my armpit had shrunk, and the motion in my shoulder had improved significantly. My arm was still very swollen but I had noticed a little bit of improvement. I figure I will have to wait for the mass in my armpit to shrink a lot more before the lymph fluid can really start to drain.
In the midst of all of these fabulous changes I had a whirlwind weekend trip to Toronto for an advocacy workshop put on by the Canadian Breast Cancer Network. This is an organisation that has been very involved in patient education and advocacy. As I have not been volunteering since Ian and I moved to Victoria I thought it was time to make some new connections and find a new project.
The workshop was designed specifically for metastatic breast cancer and some of the most significant issues faced by MBC patients. One of the most important issues is access to drugs. We learned about the actual steps involved in a new drug getting Health Canada approval and then eventually reaching the market. It turns out that once a drug is Health Canada approved (which can take up to 2 years) it can take up to another 2 years before a drug may be accessible by patients. This is because each province has to go through its own process to work with a drug company on price and coverage.
For an MBC patient that has run out of treatment options waiting 4 years for a new drug is not feasible. I am fortunate that I am only on my 3rd treatment option and there are a few more still available. But, it would only take a few failed treatment regimens and I would be at the end of the line. Based on how rapidly my progression happened over the last couple months waiting 4 years for a drug is a death sentence. This is where advocacy comes in.
The goal of the drug access campaign is to ensure access to life saving drugs for MBC patients whenever they are needed. Right now, special access to not fully approved drugs can be achieved through a few different routes. New drugs are initially available to MBC patients during drug trials, often trials are only offered to MBC patients especially in the early stages. To give patients access the trials are occasionally artificially extended so patients that have been benefiting do not lose access while the drug is moving through the approval process. Sometimes a drug company will offer compassionate access to a drug so patients can remain on the treatment. And sometimes a province will be pressured to make the drug available before it has gone through the entire approval process.
While it is good these routes to a drug are available, none of the routes are automatically available. The onus is on a specific patient or a patient advocate to request this special access and even with the request it is not a guarantee that the patient will be approved or approved before it is too late.
It is essential that new drugs are made readily available to MBC patients every time they are needed, even before full approval by provincial health systems is complete.
And I'll jump off my soapbox now. ;-)
Back to me, since I'm really important to me......my 2nd dose of TDM-1 was uneventful. I was down to a half hour infusion and a half hour observation. And no problems were observed.
I had a few days of ick feeling after but overall no complaints. These are side effects I am happy to deal with. My lumps and bumps continue to shrink, maybe some day soon my elephant arm will shrink too. At least it doesn't feel like it weighs 20 pounds any more. It only feels heavy when I raise my arm above my head (woo hoo, I can raise my arm above my head!) which made putting up Christmas lights a bit of a challenge but I got it done. Christmas baking is done and most of my shopping. I don't think I have ever been this prepared this early for Christmas before. Next up is the tree.
We did get actual snow in Victoria. It really is a rare occurrence. Here are pictures for those of you not on Facebook:
Orchid is really enjoying the snow day.
It is 11 days until my next treatment. I'll try to post again after that, but if I'm too busy, Merry Christmas, everyone!
Sunday, 23 October 2016
Riding a Roomba, or what a difference a week makes
My last post, a whopping 10 days ago, left off with my comments about the lymphedema in my right arm and how much it bothers me. Since then things have gotten a tad more adventurous.
The motion in my shoulder has been somewhat limited pretty much since all the swelling started back in March. When I mentioned the decreased mobility at an oncology appointment a little while ago one of the annoying substitutes I had said that isn't surprising because of the swelling so I didn't think much of it. Around the beginning if October I noticed that I could feel a bit of a tendon or something in my right armpit. That surprised me a bit as it made me think of something called cording that can happen after surgery. Cording is basically when the scar tissue builds up like a thick cord and can really impair mobility. Normally it shows up fairly soon after surgery so the fact that it was a year and a half later seemed a little odd.
Dealing with it requires physiotherapy so I decided I would ask about it at my next onc appointment and see what my oncologist says. She has likely felt cording before so can give me an idea if that is actually what it is.
A few days after that I got a funny kink in my neck on the right side the was a little painful but if I did this weird shoulder shrug and bend my head backwards for about 30 seconds it went away to not be thought of again. Until it happened again several days later. And then a few days after that, and then again, and again, until it was happening almost daily.
For time context, Thanksgiving weekend went by and time continued to pass. I posted my last blog and then about a day later I was doing a lymph drainage massage on my arm and I felt a little lumpy thing in my armpit next to the cordy thing I was feeling. Hmmmmmmm
At that point I figured I might as well do a breast exam since I hadn't had one for a month or so. Huh. Is that another lump?
At this point it is less than a week until my next onc appointment so I just did a general brain purge about it all and waited to see my onc and get my scan results. Until the weekend when I noticed some redness on the breast as well. Another hmmmm.
So on Tuesday, the 18th?, I went off to see my onc. The first thing she asked was how did I feel? My response was "um, good-ish, maybe. What do the scans say?"
The CT scan had been done Sept. 27th and the brain MRI Oct. 2nd so both before I had felt any lumps. The MRI remains stable and the CT mentioned some vague something or other that may or may not be anything. So nothing leaping out screaming "look at me!!"
So, I said "well, physically I feel good, the Bell's symptoms are still random and I think there may be slight signs of improvement in my hearing, but..... well I found some lumpy things."
Time for the physical exam. I said that I could only find the armpit lumps (did I mention I could now feel 2?) when I was lying down. My onc asked about the redness, and I told her I had seen it a few days ago.
Onc: "And what about the bumps?"
Me: "What bumps?" Looks down. "Oh. Those bumps. Um, didn't notice those bumps before."
So.......based on my experience at my original diagnosis, I would say that the lumps and bumps are signs of progression. The bumps are a sign of the cancer infiltrating the skin.
My oncologist agreed and said that she would book me for a mammogram and MRI to see what exactly is going on. The cording in my armpit may not actually be cording and may be a result of the cancer. She also asked if I was okay with biopsies if necessary. Yes, for sure. These sites are easy to biopsy so confirming any markers just makes sense to me.
I have already done the Estrogen receptor switch so I would like to confirm the Her2 status again. If I am switching treatments I'd prefer I switch to something that should theoretically work.
The tentative plan is moving from Herceptin and Pertuzumab to TDM-1. TDM-1 was approved for use in September 2012 so after I was originally diagnosed. It is a chemo molecule bound to a Herceptin molecule. The idea is that the Herceptin binds to the Her2 protein within the tumour dragging the chemo molecule with it. The chemo molecule then does its chemo thing within the tumour rather than on just any fast growing cell throughout my entire body. This lessens the wide spread side effects seen with a general chemo but doesn't necessarily prevent them completely. So my white cell count can still decrease and I may lose my hair or I may not or I might just get thinning.
And this is where the Roomba comes in. On my way home I started thinking about a good analogy for what the next 3 weeks until my next oncology appointment would be like. The first thing that popped into my head was the post I saw on Facebook a while ago about the incident of the Roomba in the night time. Or should I say the Roomba and the dog poo.
This post pretty much reconfirmed for me, as a pet owner, why I don't have a Roomba (if anyone doesn't know, a Roomba is a little vacuum that you program and it vacuums your house for you. Most people set them to do the vacuuming in the middle of the night or while they are at work so it doesn't disturb them.)
The guy's post went on to explain how he got up in the middle of the night one night and could smell dog poo. He went into the living room and found a dog shit disaster. Some time after he went to bed and before the Roomba did it's nightly clean, the dog had pooed in the living room. The result was dog shit everywhere. And I do mean everywhere. Apparently while the wheels on the Roomba are great as they enable the Roomba to run on practically any carpet the wheels are stunningly capable at picking up and smearing dog poo everywhere the Roomba goes.
There was mention of an area rug, and this part I actually thought was pretty cute. The guy said that his wife really loved the rug and he knew as soon as he saw the rug there was no way it could be cleaned and had to be thrown out. But, he knew that if he just threw it out his wife would ask him if he had at least tried cleaning it. So, since she loved the rug and he loved her he even tried to clean the rug before he threw it out.
While this particular incident seemed extreme, it was the first thing I thought of while thinking of the next 3 weeks. From there my mind jumped to the videos posted on the internet of cats riding Roombas. In particular the orange cat with the red cape. (How is the internet like ancient Egypt? It's where we write on walls and worship cats.)
So I decided I was like the orange cat with the red cape riding around on an unprogrammed Roomba so I never knew when I would run into a wall or know quite where I would have to go next.
On Thursday morning MRI booking called me and I got my appointment for Friday morning. That afternoon I was called again and I got an appointment in breast imaging for even earlier Friday morning. At least it was all scheduled for Vic General so I didn't have to travel around.
Friday morning at 7:45 I was in the mammogram waiting room. Turns out Friday (Oct. 21) is National Mammogram Day so if you haven't had a mammogram recently you should book one.
I was in the room with an older lady who had been cancer for free for 7 years. In September she was in hospital with fluid on her lungs, her cancer had returned. She had her mammogram scheduled for that morning and that afternoon she was going to see her oncologist to get a treatment plan. We talked about our experiences with chemo and the chemo ward and being in hospital and laughed about some of the crazy stuff. A couple more women came into the waiting room and I suspect they thought we were crazy to be laughing about anything. Hopefully those women are lucky with their results and they won't have their own chemo stories in a few years.
When I was getting my mammogram done I told the tech that I also had an MRI scheduled. She took my pictures and then did an ultrasound on me. After she discussed my case with the radiologist it was decided that I should go for my MRI then come back to get the biopsies done. There was a concern that any bleeding from the biopsies could interfere with the MRI.
I had about half an hour until I had to check in for my MRI. Fortunately I was prepared and had brought a book, unfortunately I had to fast for the MRI so no coffee while I waited. When I checked in for the MRI I was told they were slightly behind as a machine was down at the Jubilee so they were trying to fit in some emergency scans.
I ended up not being be delayed much, maybe 15 minutes. It was a breast MRI instead of brain MRI so a little different from usual. I was face down instead of face up and I went into the scanner feet first instead of head first. The scanner was still really loud. Definitely the worst part of the experience.
Once I was done with the MRI it was back to the breast imaging area for the biopsies. I saw my tech and she said the radiologist wanted to see the MRI pictures before doing the biopsies just in case they showed something she hadn't seen on the mammogram and ultrasound.
Fine by me as I needed to add money to my parking and it meant I could get something to eat. After caffeine and a muffin it was back to breast imaging again. I was getting tired of following the pink line by that point.
Getting the biopsies done reminded me of my original diagnosis. That time the radiologist was wearing open toed shoes (definitely something to be frowned upon) and 2 days later I was trying my best to not pass out standing in the customs line at the Vancouver airport as I was heading off to Rochester, NY for training in my new job.
This time it much less eventful. My radiologist was wearing running shoes and it is now 2 days later and I'm sitting on my couch drinking coffee. No travel plans booked.
Now I twiddle my thumbs and maybe ride around on the slightly more programmed Roomba, I feel like I shouldn't be running into any walls for a few days at least. My onc appointment is Nov. 7th. That means treatment change just in time for my birthday :-P
On a slightly different note, who can believe the Canucks are 4-0-1 to start the season???? EA sports is predicting the Canucks will finish the season last in the NHL with 63 points. Unless a lot of points come in overtime or shootout losses that could make for a long, depressing season. Since EA also predicted Nashville will win the cup, I sure hope the predictions are horribly wrong this year, even if I do like P.K. Subban.
The motion in my shoulder has been somewhat limited pretty much since all the swelling started back in March. When I mentioned the decreased mobility at an oncology appointment a little while ago one of the annoying substitutes I had said that isn't surprising because of the swelling so I didn't think much of it. Around the beginning if October I noticed that I could feel a bit of a tendon or something in my right armpit. That surprised me a bit as it made me think of something called cording that can happen after surgery. Cording is basically when the scar tissue builds up like a thick cord and can really impair mobility. Normally it shows up fairly soon after surgery so the fact that it was a year and a half later seemed a little odd.
Dealing with it requires physiotherapy so I decided I would ask about it at my next onc appointment and see what my oncologist says. She has likely felt cording before so can give me an idea if that is actually what it is.
A few days after that I got a funny kink in my neck on the right side the was a little painful but if I did this weird shoulder shrug and bend my head backwards for about 30 seconds it went away to not be thought of again. Until it happened again several days later. And then a few days after that, and then again, and again, until it was happening almost daily.
For time context, Thanksgiving weekend went by and time continued to pass. I posted my last blog and then about a day later I was doing a lymph drainage massage on my arm and I felt a little lumpy thing in my armpit next to the cordy thing I was feeling. Hmmmmmmm
At that point I figured I might as well do a breast exam since I hadn't had one for a month or so. Huh. Is that another lump?
At this point it is less than a week until my next onc appointment so I just did a general brain purge about it all and waited to see my onc and get my scan results. Until the weekend when I noticed some redness on the breast as well. Another hmmmm.
So on Tuesday, the 18th?, I went off to see my onc. The first thing she asked was how did I feel? My response was "um, good-ish, maybe. What do the scans say?"
The CT scan had been done Sept. 27th and the brain MRI Oct. 2nd so both before I had felt any lumps. The MRI remains stable and the CT mentioned some vague something or other that may or may not be anything. So nothing leaping out screaming "look at me!!"
So, I said "well, physically I feel good, the Bell's symptoms are still random and I think there may be slight signs of improvement in my hearing, but..... well I found some lumpy things."
Time for the physical exam. I said that I could only find the armpit lumps (did I mention I could now feel 2?) when I was lying down. My onc asked about the redness, and I told her I had seen it a few days ago.
Onc: "And what about the bumps?"
Me: "What bumps?" Looks down. "Oh. Those bumps. Um, didn't notice those bumps before."
So.......based on my experience at my original diagnosis, I would say that the lumps and bumps are signs of progression. The bumps are a sign of the cancer infiltrating the skin.
My oncologist agreed and said that she would book me for a mammogram and MRI to see what exactly is going on. The cording in my armpit may not actually be cording and may be a result of the cancer. She also asked if I was okay with biopsies if necessary. Yes, for sure. These sites are easy to biopsy so confirming any markers just makes sense to me.
I have already done the Estrogen receptor switch so I would like to confirm the Her2 status again. If I am switching treatments I'd prefer I switch to something that should theoretically work.
The tentative plan is moving from Herceptin and Pertuzumab to TDM-1. TDM-1 was approved for use in September 2012 so after I was originally diagnosed. It is a chemo molecule bound to a Herceptin molecule. The idea is that the Herceptin binds to the Her2 protein within the tumour dragging the chemo molecule with it. The chemo molecule then does its chemo thing within the tumour rather than on just any fast growing cell throughout my entire body. This lessens the wide spread side effects seen with a general chemo but doesn't necessarily prevent them completely. So my white cell count can still decrease and I may lose my hair or I may not or I might just get thinning.
And this is where the Roomba comes in. On my way home I started thinking about a good analogy for what the next 3 weeks until my next oncology appointment would be like. The first thing that popped into my head was the post I saw on Facebook a while ago about the incident of the Roomba in the night time. Or should I say the Roomba and the dog poo.
This post pretty much reconfirmed for me, as a pet owner, why I don't have a Roomba (if anyone doesn't know, a Roomba is a little vacuum that you program and it vacuums your house for you. Most people set them to do the vacuuming in the middle of the night or while they are at work so it doesn't disturb them.)
The guy's post went on to explain how he got up in the middle of the night one night and could smell dog poo. He went into the living room and found a dog shit disaster. Some time after he went to bed and before the Roomba did it's nightly clean, the dog had pooed in the living room. The result was dog shit everywhere. And I do mean everywhere. Apparently while the wheels on the Roomba are great as they enable the Roomba to run on practically any carpet the wheels are stunningly capable at picking up and smearing dog poo everywhere the Roomba goes.
There was mention of an area rug, and this part I actually thought was pretty cute. The guy said that his wife really loved the rug and he knew as soon as he saw the rug there was no way it could be cleaned and had to be thrown out. But, he knew that if he just threw it out his wife would ask him if he had at least tried cleaning it. So, since she loved the rug and he loved her he even tried to clean the rug before he threw it out.
While this particular incident seemed extreme, it was the first thing I thought of while thinking of the next 3 weeks. From there my mind jumped to the videos posted on the internet of cats riding Roombas. In particular the orange cat with the red cape. (How is the internet like ancient Egypt? It's where we write on walls and worship cats.)
So I decided I was like the orange cat with the red cape riding around on an unprogrammed Roomba so I never knew when I would run into a wall or know quite where I would have to go next.
On Thursday morning MRI booking called me and I got my appointment for Friday morning. That afternoon I was called again and I got an appointment in breast imaging for even earlier Friday morning. At least it was all scheduled for Vic General so I didn't have to travel around.
Friday morning at 7:45 I was in the mammogram waiting room. Turns out Friday (Oct. 21) is National Mammogram Day so if you haven't had a mammogram recently you should book one.
I was in the room with an older lady who had been cancer for free for 7 years. In September she was in hospital with fluid on her lungs, her cancer had returned. She had her mammogram scheduled for that morning and that afternoon she was going to see her oncologist to get a treatment plan. We talked about our experiences with chemo and the chemo ward and being in hospital and laughed about some of the crazy stuff. A couple more women came into the waiting room and I suspect they thought we were crazy to be laughing about anything. Hopefully those women are lucky with their results and they won't have their own chemo stories in a few years.
When I was getting my mammogram done I told the tech that I also had an MRI scheduled. She took my pictures and then did an ultrasound on me. After she discussed my case with the radiologist it was decided that I should go for my MRI then come back to get the biopsies done. There was a concern that any bleeding from the biopsies could interfere with the MRI.
I had about half an hour until I had to check in for my MRI. Fortunately I was prepared and had brought a book, unfortunately I had to fast for the MRI so no coffee while I waited. When I checked in for the MRI I was told they were slightly behind as a machine was down at the Jubilee so they were trying to fit in some emergency scans.
I ended up not being be delayed much, maybe 15 minutes. It was a breast MRI instead of brain MRI so a little different from usual. I was face down instead of face up and I went into the scanner feet first instead of head first. The scanner was still really loud. Definitely the worst part of the experience.
Once I was done with the MRI it was back to the breast imaging area for the biopsies. I saw my tech and she said the radiologist wanted to see the MRI pictures before doing the biopsies just in case they showed something she hadn't seen on the mammogram and ultrasound.
Fine by me as I needed to add money to my parking and it meant I could get something to eat. After caffeine and a muffin it was back to breast imaging again. I was getting tired of following the pink line by that point.
Getting the biopsies done reminded me of my original diagnosis. That time the radiologist was wearing open toed shoes (definitely something to be frowned upon) and 2 days later I was trying my best to not pass out standing in the customs line at the Vancouver airport as I was heading off to Rochester, NY for training in my new job.
This time it much less eventful. My radiologist was wearing running shoes and it is now 2 days later and I'm sitting on my couch drinking coffee. No travel plans booked.
Now I twiddle my thumbs and maybe ride around on the slightly more programmed Roomba, I feel like I shouldn't be running into any walls for a few days at least. My onc appointment is Nov. 7th. That means treatment change just in time for my birthday :-P
On a slightly different note, who can believe the Canucks are 4-0-1 to start the season???? EA sports is predicting the Canucks will finish the season last in the NHL with 63 points. Unless a lot of points come in overtime or shootout losses that could make for a long, depressing season. Since EA also predicted Nashville will win the cup, I sure hope the predictions are horribly wrong this year, even if I do like P.K. Subban.
Thursday, 13 October 2016
Happy Metastatic Breast Cancer Awareness Day
Or something. In this month of 'Pinktober' of breast cancer awareness, the US created an official day just for Mets patients, Oct. 13th. The best day will definitely be when it falls on a Friday >.<
It has been a busy week with Thanksgiving on Monday, International Day of the Girl on Tuesday, Coming Out Day on Wednesday, and now Mets Day. Most people that will read this post already know me and what a Metastatic diagnosis means, but this is an awareness day so too bad for you, it is refresher time......
One in 9 women will experience some form of breast cancer. At the the time of diagnosis between 6 and 10% will be stage IV which means the cancer has already spread beyond the breast or neighbouring lymph nodes and has metastasised to the bones, lungs, liver, or brain. In my case the cancer was in my liver and in several spots on my bones.
A short mention of the difference between stage IV and Metastatic cancer......the stage of a cancer at initial diagnosis is the official stage of a cancer. No matter what happens in the future this does not change. A patient may initially be diagnosed as stage II and 12 years later the cancer may be found in the bones. This patient is a stage II patient with bone metastases or Metastatic Breast Cancer, she does not become a stage IV patient. A stage IV patient has Metastatic Breast Cancer from the get go. These terms are used interchangeably by most people but I find the difference quite significant as the mentality that drives each patient is quite different.
The difference is not so much caused by the patients themselves but by the way society views the patients. Society likes good news stories about fighters with happy endings. I know I much prefer happy endings, but as of right now with the state of cancer research an MBC patient never has a happy ending. As a result, society prefers to focus on the early stage patients that can be cured and be labelled a survivor. Us Metsters aren't survivors, we are surviving. Some within the Mets community use the terms Metavivor, others use Lifer. A few other terms get tossed around but those two seem to be the most common. Personally, I am more of a Cancer Coper. I cope with cancer, run around to appointments, get annoyed by the fatigue, and then get on with my life. The cancer may always be there but that is not all I am and I try my best to not have it run my life, although it kind of does. It is difficult for anything that required 50 appointments from January to the beginning of July to not control your life :-P
And done with running off on a tangent.
Of the 90 to 94% of breast cancer patients diagnosed at an earlier stage it is estimated that about 30% will eventually be diagnosed with metastatic breast cancer. The stage of the original cancer does not seem to be an indicator of the possibility of later being diagnosed with MBC.
It is estimated that about 150,000 women and men currently have MBC in the United States. Men can get breast cancer and it can also metastisise. Extrapolating that number down, there are approximately 15,000 MBC patients in Canada.
Only about 3 to 5% of research dollars are spent on all metastatic cancers yet for breast cancer only the metastatic form of the disease kills. Canada and Europe are around 5%, the US around 3%. MBC patients do benefit from a portion of the dollars spent on other aspects of breast cancer such as new drug treatments but perhaps better understanding how cancer metastisises would be helpful in stopping metastases from happening at all.
Having metastatic breast cancer also means that treatment never ends. I take a pill every day, get my Herceptin and Pertuzumab infusions every 3 weeks, my zoladex injection every 4 weeks, and my Pamidronate infusion every 4 weeks. And that happens every month of every year for as long as they all work and keep the cancer in check. As one drug fails it will be stopped and a new one will be added but there is no end to the drugs until I run out of drugs. Hopefully the researchers will keep finding new drugs.
Okey doke, I think that is enough education for one day, now a quick run down on how I am doing. I had conflicting scans in April, CT and MRI scans were lovely and showed stability in some spots and improvement in others while the PET scan was terrible and showed all kinds of progression. Repeat scans were done at the end of July then Ian and I popped over to Toronto and visit my cute little nephew.
We had a side trip down to a lovely place, Skaneateles, New York, to visit Ian's eldest sister and her family. So much good food, gotta love a place with a bakery that pumps out fresh donuts all day long. It is right on Skaneateles Lake, one of the cleanest lakes in the US, which seems so odd when it is only about half an hour from Syracuse, home of one of the most polluted lakes in the US.
It has been a busy week with Thanksgiving on Monday, International Day of the Girl on Tuesday, Coming Out Day on Wednesday, and now Mets Day. Most people that will read this post already know me and what a Metastatic diagnosis means, but this is an awareness day so too bad for you, it is refresher time......
One in 9 women will experience some form of breast cancer. At the the time of diagnosis between 6 and 10% will be stage IV which means the cancer has already spread beyond the breast or neighbouring lymph nodes and has metastasised to the bones, lungs, liver, or brain. In my case the cancer was in my liver and in several spots on my bones.
A short mention of the difference between stage IV and Metastatic cancer......the stage of a cancer at initial diagnosis is the official stage of a cancer. No matter what happens in the future this does not change. A patient may initially be diagnosed as stage II and 12 years later the cancer may be found in the bones. This patient is a stage II patient with bone metastases or Metastatic Breast Cancer, she does not become a stage IV patient. A stage IV patient has Metastatic Breast Cancer from the get go. These terms are used interchangeably by most people but I find the difference quite significant as the mentality that drives each patient is quite different.
The difference is not so much caused by the patients themselves but by the way society views the patients. Society likes good news stories about fighters with happy endings. I know I much prefer happy endings, but as of right now with the state of cancer research an MBC patient never has a happy ending. As a result, society prefers to focus on the early stage patients that can be cured and be labelled a survivor. Us Metsters aren't survivors, we are surviving. Some within the Mets community use the terms Metavivor, others use Lifer. A few other terms get tossed around but those two seem to be the most common. Personally, I am more of a Cancer Coper. I cope with cancer, run around to appointments, get annoyed by the fatigue, and then get on with my life. The cancer may always be there but that is not all I am and I try my best to not have it run my life, although it kind of does. It is difficult for anything that required 50 appointments from January to the beginning of July to not control your life :-P
And done with running off on a tangent.
Of the 90 to 94% of breast cancer patients diagnosed at an earlier stage it is estimated that about 30% will eventually be diagnosed with metastatic breast cancer. The stage of the original cancer does not seem to be an indicator of the possibility of later being diagnosed with MBC.
It is estimated that about 150,000 women and men currently have MBC in the United States. Men can get breast cancer and it can also metastisise. Extrapolating that number down, there are approximately 15,000 MBC patients in Canada.
Only about 3 to 5% of research dollars are spent on all metastatic cancers yet for breast cancer only the metastatic form of the disease kills. Canada and Europe are around 5%, the US around 3%. MBC patients do benefit from a portion of the dollars spent on other aspects of breast cancer such as new drug treatments but perhaps better understanding how cancer metastisises would be helpful in stopping metastases from happening at all.
Having metastatic breast cancer also means that treatment never ends. I take a pill every day, get my Herceptin and Pertuzumab infusions every 3 weeks, my zoladex injection every 4 weeks, and my Pamidronate infusion every 4 weeks. And that happens every month of every year for as long as they all work and keep the cancer in check. As one drug fails it will be stopped and a new one will be added but there is no end to the drugs until I run out of drugs. Hopefully the researchers will keep finding new drugs.
Okey doke, I think that is enough education for one day, now a quick run down on how I am doing. I had conflicting scans in April, CT and MRI scans were lovely and showed stability in some spots and improvement in others while the PET scan was terrible and showed all kinds of progression. Repeat scans were done at the end of July then Ian and I popped over to Toronto and visit my cute little nephew.
We had a side trip down to a lovely place, Skaneateles, New York, to visit Ian's eldest sister and her family. So much good food, gotta love a place with a bakery that pumps out fresh donuts all day long. It is right on Skaneateles Lake, one of the cleanest lakes in the US, which seems so odd when it is only about half an hour from Syracuse, home of one of the most polluted lakes in the US.
 |
| Downtown Skaneateles from the lake |
Downtown is only a couple of blocks long. Skaneateles itself is a village of only about 3000 people. The population increases to about 7000 in the summer when people return to their places on the lake.
Back in Victoria I got my scan results. Conflicting results again. CT and MRI scans were good again but the PET again showed all kinds of badness. That means more scans sooner so at the end of September I had another CT and MRI. I see my oncologist on Tuesday so I should get the results then.
Overall I feel about the same as always. I get a fatigue when I do too much and I have my Bell's palsy symptoms but they are good one day, less good the next, maybe good again, then really bad. They don't seem to change much. I still also have lymphedema in my left hand and upper right arm. I really need to go to a massage therapist to get some proper lymph drainage done to get it resolved but I am not super excited about adding more appointments to the already crazy mix.
That is it for now. Time to get ready for the storms that are supposed to be hitting us soon.
Go Jays!!
Wednesday, 13 July 2016
4 years
......and counting. And I have the cake to prove it:
It is a tough choice every year about whether today is a celebration for making it another year or a sad day of remembrance for the things I have lost. This year I decided today was a good reason for cake and thus today is a celebration.
The last 4 years may not have been how I wanted or planned to spend my time but I can't deny it has been an adventure. Lots of good and lots of bad and since I am in this adventure I have every intention of continuing on with it for many years more.
To assist me in this adventure are my super supportive family and friends, my oncologist and all the other docs I have seen, the fabulous chemo nurses, the million and one ultrasound, CT, MRI, and nuclear medicine techs, and of course all the lab assistants and lab techs that have collected and analysed all of my assorted lab specimens. Behind the scenes, there is also all of the researchers that work tirelessly on anything and everything related to cancer and how to slow it down, stop it, maybe even prevent it.
In the 4 years that I have been living in this world of cancer I know of 3 new drugs that have been approved for treating breast cancer. TDM-1 was approved in the fall of 2012 and is another targeted therapy for Her-2 positive tumours. Pertuzumab, which I am currently on, was approved in April 2013. The treatment protocol I was just on with the combination of Docetaxol, Herceptin, and Pertuzumab is now the standard first line of defence for stage IV patients in BC. Ibrance, a hormonal therapy for ER+, Her-2 negative patients, was approved in May 2016.
At the time of my diagnosis in July 2012, 18 - 25% of stage IV patients made it to 5 years. The median survival was 28 months. With the addition of these 3 drugs to the current drug protocols it is hoped there will be a noticable increase in survival rates in the next few years.
Of course, to keep all of this research going the big requirement is money. A fantastic charity to support is the BC Cancer Foundation, the fundraising arm of the BC Cancer Agency, where I go for all of my treatment. The Foundation is a major funder for research done at the Cancer Agency, but also does wonderful things like supplying information packages to newly diagnosed patients that supply a lot of the initial information needed by each patient to better understand and deal with their diagnosis.
Conveniently, anyone interested in donating to this organisation, my wonderful friend Grace is participating in the Ride to Conquer Cancer this year. This is a 200 km bicycle ride that takes place the last weekend in August from Vancouver to Seattle, Washington and is a huge fundraiser for the BC Cancer Foundation. To make this very easy, here is a link to Grace's fundraising page http://www.conquercancer.ca/site/TR/Events/Vancouver2016?px=4069886&pg=personal&fr_id=1573.
I'm sure some of you are thinking, 'oh, that is a pretty specific charity and it only benefits BC patients, I don't think I'll donate.' Too bad, you're not off the hook, send a little money to the Canadian Cancer Society. I've been at this cancer thing long enough and dealt with enough crap, I'm okay with bossing people around and telling them where to put their money ;-)
And if you're from outside Canada drop a few dollars to your favourite cancer charity, I and every other cancer patient thanks you. It is the research that keeps us alive and we would all like to live a little longer!
And after you have sent off a few dollars have a lovely day! And keep your chin up, it is almost the weekend :-)
It is a tough choice every year about whether today is a celebration for making it another year or a sad day of remembrance for the things I have lost. This year I decided today was a good reason for cake and thus today is a celebration.
The last 4 years may not have been how I wanted or planned to spend my time but I can't deny it has been an adventure. Lots of good and lots of bad and since I am in this adventure I have every intention of continuing on with it for many years more.
To assist me in this adventure are my super supportive family and friends, my oncologist and all the other docs I have seen, the fabulous chemo nurses, the million and one ultrasound, CT, MRI, and nuclear medicine techs, and of course all the lab assistants and lab techs that have collected and analysed all of my assorted lab specimens. Behind the scenes, there is also all of the researchers that work tirelessly on anything and everything related to cancer and how to slow it down, stop it, maybe even prevent it.
In the 4 years that I have been living in this world of cancer I know of 3 new drugs that have been approved for treating breast cancer. TDM-1 was approved in the fall of 2012 and is another targeted therapy for Her-2 positive tumours. Pertuzumab, which I am currently on, was approved in April 2013. The treatment protocol I was just on with the combination of Docetaxol, Herceptin, and Pertuzumab is now the standard first line of defence for stage IV patients in BC. Ibrance, a hormonal therapy for ER+, Her-2 negative patients, was approved in May 2016.
At the time of my diagnosis in July 2012, 18 - 25% of stage IV patients made it to 5 years. The median survival was 28 months. With the addition of these 3 drugs to the current drug protocols it is hoped there will be a noticable increase in survival rates in the next few years.
Of course, to keep all of this research going the big requirement is money. A fantastic charity to support is the BC Cancer Foundation, the fundraising arm of the BC Cancer Agency, where I go for all of my treatment. The Foundation is a major funder for research done at the Cancer Agency, but also does wonderful things like supplying information packages to newly diagnosed patients that supply a lot of the initial information needed by each patient to better understand and deal with their diagnosis.
Conveniently, anyone interested in donating to this organisation, my wonderful friend Grace is participating in the Ride to Conquer Cancer this year. This is a 200 km bicycle ride that takes place the last weekend in August from Vancouver to Seattle, Washington and is a huge fundraiser for the BC Cancer Foundation. To make this very easy, here is a link to Grace's fundraising page http://www.conquercancer.ca/site/TR/Events/Vancouver2016?px=4069886&pg=personal&fr_id=1573.
I'm sure some of you are thinking, 'oh, that is a pretty specific charity and it only benefits BC patients, I don't think I'll donate.' Too bad, you're not off the hook, send a little money to the Canadian Cancer Society. I've been at this cancer thing long enough and dealt with enough crap, I'm okay with bossing people around and telling them where to put their money ;-)
And if you're from outside Canada drop a few dollars to your favourite cancer charity, I and every other cancer patient thanks you. It is the research that keeps us alive and we would all like to live a little longer!
And after you have sent off a few dollars have a lovely day! And keep your chin up, it is almost the weekend :-)
Saturday, 9 July 2016
Steroid free me
I have been steroid free for 2 months now. Yay!!! The best part is all the water weight is gone so my face no longer hurts every time it moves. Such a wonderful thing!
My last chemo was on March 28th. My last dose of steroid was March 29th. For the next 5 days things were okay and then I get the official smackdown of steroid withdrawal. Not a pretty experience. My energy completely disappeared along with my appetite which was hit or miss to start with due to my dysfunctional taste buds. And then I started getting nausea so I was not a happy camper. I almost cracked on day 3 but I was so keen to get off the steroids I sucked it up. On day 4 there was a vague sense that the worst was over and by day 6 there was definite improvement.
To celebrate the end of chemo and our 10th wedding anniversary, Ian and I went down to Ixtapa, Mexico the last week of April. This was my view while I sat on the beach in the shade had some nice person bring me drinks.....
We did make it in to the nearby town, Zihuatanejo, on the Sunday evening for a small festival and it would be neat to visit the area again.
I have had some fun while flying this year. Between my trip to Winnipeg and my trip to Mexico I have been "randomly" selected 3 out of 4 times through security for further screening and swabbing for drugs or explosives. I figure it is because I have looked so obviously like a cancer patient security is hoping for a positive test for pot to get to their quotas. Too bad for them I'm negative. And I always have a giggle at their looks off shock when I pull off my tuque and flash my bald head. Gotta do what I can to entertain myself :-D
Since we have returned from Mexico my energy has been returning pretty quickly. I suspect my bone marrow has returned to full function and the red blood cells are back in circulation. I have also been doing a little gardening. We have been over run with kale, which I normally love but my taste buds have completely rebelled against it. And we have been picking our own cucumbers for a couple weeks now.
I have so far failed at my attempts for cabbage and cauliflower but I will keep on trying. And there are tomatoes and watermelons that have started. And the potatoes and onions look super healthy. And there are carrots and lettuce but I don't see much activity in the parsnips. I guess I will try those again too.
Oh, and zucchini, that may be out of control.
I was going to stop my post here but I realised I hadn't actually covered any of the cancer stuff other than chemo ending and getting off the steroids. With the end of chemo the big question is whether I should back on the anti estrogen treatments I was on before. My oncologist discussed my case with the tumour group again and the end result was pretty much a 50/50 split on hormone treatment.
The original cancer was estrogen receptor positive but the cancer cells in my right axilla lymph nodes last year were estrogen receptor negative. The status of the tumour at the base of my skull and the lesion in my right rib aren't known. The original ER+ tumours were knocked down by my first run through chemo plus the Herceptin and hormone therapy I had been on. The indecision is based on whether the Herceptin and Pertuzumab I am now on is sufficient to continue to keep the ER+ tumours knocked down. Not knowing the status of my skull and rib spots further complicates matters.
It turns out the Cancer Agency in Vancouver is currently running a study using a new form of PET scan. A regular PET uses a form of glucose attached to a radioactive tracer to identify any cancerous areas. The PET under study uses an estrogen molecule attached to a radioactive tracer. This PET, in theory, will identify ER+ spots.
I spent a few action packed days in Vancouver getting my scans done. First was the estrogen scan and 2 days later was the regular PET.
The 2 scans were then compared and it was determined that all of the currently active cancer is ER-. In theory that indicates that hormone therapy isn't necessary but as a part of the study I have to go back on the hormone therapy anyway.
I was of mixed opinion about going back on the hormone therapy. I would have liked a break from all the hot flashes but I also wonder if the ER+ cancer needed the hormone therapy to stay away. Makes the decision easy when there is no decision and I just have to go back on the therapy.
The disturbing bit about regular the PET scan was that lymph nodes in both my neck and in the area under my sternum lit up. This was totally unexpected as a CT scan had been done only a month before and there was no sign of any new activity. Based on the PET scan results I am going to be more closely monitored for the next little while. That means I have a brain MRI, abdominal CT, and repeat PET scans all scheduled for July.
I also had a repeat ultrasound on my right arm to check on the blood clot. Something good there, no sign of clot now so only 2 more weeks of anticoagulant injections and I am done. My abdomen is very excited to not be poked on a daily basis.
Now I think I have covered everything......
Well almost. The May long weekend turned out to be a different health adventure. Jasper stopped eating and then started showing signs of liver failure. On the Monday Ian and I took him out to Whiffen Spit in Sooke for what we were thinking might be our last family adventure.........
I called the vet 1st thing Tuesday morning and they got Jasper in right away. Talk of liver failure will do that. The vet was nice and calm and collected some blood and trimmed his nails. The plan was to get Jasper in for an abdominal ultrasound the next day to see if there was anything visibly wrong with his liver.
To prep for the ultrasound Jasper could have no food or water after midnight so at about 11:50 I made him drink some water and I thought I would try to give him a few kibbles even though he still wasn't eating. Being a brat he immediately ate the kibble so I have him a few more and Jasper ate those so I gave him more and he ate that. So I gave him about half a cup more and he gobbled it down. Figures the night before the expensive test his appetite starts coming back.
The ultrasound diagnosed a sludgy gall bladder. It is unknown if that was a blockage that cleared and the blockage had caused a build up of sludge or if his gall bladder just isn't draining properly but it means more pills to go with the ones he is already on for his Addison's. And we are cutting some fat out of Jasper's diet so no more butter to make the pills go down easier. Poor guy.
And now I am really done. Have a lovely weekend!!
My last chemo was on March 28th. My last dose of steroid was March 29th. For the next 5 days things were okay and then I get the official smackdown of steroid withdrawal. Not a pretty experience. My energy completely disappeared along with my appetite which was hit or miss to start with due to my dysfunctional taste buds. And then I started getting nausea so I was not a happy camper. I almost cracked on day 3 but I was so keen to get off the steroids I sucked it up. On day 4 there was a vague sense that the worst was over and by day 6 there was definite improvement.
To celebrate the end of chemo and our 10th wedding anniversary, Ian and I went down to Ixtapa, Mexico the last week of April. This was my view while I sat on the beach in the shade had some nice person bring me drinks.....
We did make it in to the nearby town, Zihuatanejo, on the Sunday evening for a small festival and it would be neat to visit the area again.
I have had some fun while flying this year. Between my trip to Winnipeg and my trip to Mexico I have been "randomly" selected 3 out of 4 times through security for further screening and swabbing for drugs or explosives. I figure it is because I have looked so obviously like a cancer patient security is hoping for a positive test for pot to get to their quotas. Too bad for them I'm negative. And I always have a giggle at their looks off shock when I pull off my tuque and flash my bald head. Gotta do what I can to entertain myself :-D
Since we have returned from Mexico my energy has been returning pretty quickly. I suspect my bone marrow has returned to full function and the red blood cells are back in circulation. I have also been doing a little gardening. We have been over run with kale, which I normally love but my taste buds have completely rebelled against it. And we have been picking our own cucumbers for a couple weeks now.
I have so far failed at my attempts for cabbage and cauliflower but I will keep on trying. And there are tomatoes and watermelons that have started. And the potatoes and onions look super healthy. And there are carrots and lettuce but I don't see much activity in the parsnips. I guess I will try those again too.
Oh, and zucchini, that may be out of control.
I was going to stop my post here but I realised I hadn't actually covered any of the cancer stuff other than chemo ending and getting off the steroids. With the end of chemo the big question is whether I should back on the anti estrogen treatments I was on before. My oncologist discussed my case with the tumour group again and the end result was pretty much a 50/50 split on hormone treatment.
The original cancer was estrogen receptor positive but the cancer cells in my right axilla lymph nodes last year were estrogen receptor negative. The status of the tumour at the base of my skull and the lesion in my right rib aren't known. The original ER+ tumours were knocked down by my first run through chemo plus the Herceptin and hormone therapy I had been on. The indecision is based on whether the Herceptin and Pertuzumab I am now on is sufficient to continue to keep the ER+ tumours knocked down. Not knowing the status of my skull and rib spots further complicates matters.
It turns out the Cancer Agency in Vancouver is currently running a study using a new form of PET scan. A regular PET uses a form of glucose attached to a radioactive tracer to identify any cancerous areas. The PET under study uses an estrogen molecule attached to a radioactive tracer. This PET, in theory, will identify ER+ spots.
I spent a few action packed days in Vancouver getting my scans done. First was the estrogen scan and 2 days later was the regular PET.
The 2 scans were then compared and it was determined that all of the currently active cancer is ER-. In theory that indicates that hormone therapy isn't necessary but as a part of the study I have to go back on the hormone therapy anyway.
I was of mixed opinion about going back on the hormone therapy. I would have liked a break from all the hot flashes but I also wonder if the ER+ cancer needed the hormone therapy to stay away. Makes the decision easy when there is no decision and I just have to go back on the therapy.
The disturbing bit about regular the PET scan was that lymph nodes in both my neck and in the area under my sternum lit up. This was totally unexpected as a CT scan had been done only a month before and there was no sign of any new activity. Based on the PET scan results I am going to be more closely monitored for the next little while. That means I have a brain MRI, abdominal CT, and repeat PET scans all scheduled for July.
I also had a repeat ultrasound on my right arm to check on the blood clot. Something good there, no sign of clot now so only 2 more weeks of anticoagulant injections and I am done. My abdomen is very excited to not be poked on a daily basis.
Now I think I have covered everything......
Well almost. The May long weekend turned out to be a different health adventure. Jasper stopped eating and then started showing signs of liver failure. On the Monday Ian and I took him out to Whiffen Spit in Sooke for what we were thinking might be our last family adventure.........
I called the vet 1st thing Tuesday morning and they got Jasper in right away. Talk of liver failure will do that. The vet was nice and calm and collected some blood and trimmed his nails. The plan was to get Jasper in for an abdominal ultrasound the next day to see if there was anything visibly wrong with his liver.
To prep for the ultrasound Jasper could have no food or water after midnight so at about 11:50 I made him drink some water and I thought I would try to give him a few kibbles even though he still wasn't eating. Being a brat he immediately ate the kibble so I have him a few more and Jasper ate those so I gave him more and he ate that. So I gave him about half a cup more and he gobbled it down. Figures the night before the expensive test his appetite starts coming back.
The ultrasound diagnosed a sludgy gall bladder. It is unknown if that was a blockage that cleared and the blockage had caused a build up of sludge or if his gall bladder just isn't draining properly but it means more pills to go with the ones he is already on for his Addison's. And we are cutting some fat out of Jasper's diet so no more butter to make the pills go down easier. Poor guy.
And now I am really done. Have a lovely weekend!!
Monday, 28 March 2016
The Results are In.....
Last Monday, Leap Year Day, I saw my radiation oncologist to get my MRI results. Ian had the day off so he came with me. It was the first time he hasmet my rad onc. We seemed to spend a long time twiddling our thumbs but it turned out my onc had a resident with her and any time there is a teaching going on things just take longer. Fine with me, we need the newbies so they are ready to replace the oldies.
When my rad onc came in the exam room the first thing she said that the MRI was showing the skull lesion as being mostly stable with minor shrinkage away from the lining of the brain. Even with the stability because of the rather dramatic changes for the worse in my symptoms, as soon as she had my MRI she consulted with the stereo static radiation group.
At that point I practically jumped out of my chair and started waving my arms...... "wait, wait, things have changed again. My symptoms are now dramatically better than they have been in months. I cut my steroid down to 1 day off, 2 days on for the last 2 weeks with no problems. And my tongue! My tongue! It is smoothing out and I am not getting the weird aliens trying to punch their way out of my tongue! See???" And I stuck my tongue out at her...."See???"
My onc looked at my tongue and she was totally amazed at the changes.
And I explained how I felt like I had a whole head and my ear has popped a few times. I have probably not felt this good since September. Needless to say my onc was totally thrilled with what was going on.
With all the symptom news out of the way we moved on to what the stereo static group said. This group does a much more specific targeting of radiation sites than is routinely done with radiation. Stereo static radiation is typically done at sites that are at higher risk of damage from radiation or at sites that have been previously irradiated and are now close to the maximum threshold of allowable radiation. In my case both situations apply.
The lesion is 8 mm away from my spinal cord which is a rather delicate piece of my anatomy. Plus, with previous radiation I was hit from both the left and right side so I have reached my maximum allowable dosage of radiation for my spinal cord in that area.
With all of that the stereo specific group was confident that they could target the lesion by only going at it from the right side and were ready to move to a planning session. At the actual radiation sessions I would again be strapped to the table with the face mask and then immediately prior to each session I would have a CT scan done to ensure I was in EXACTLY the right position. No pressure on anyone :-P
Because of the improvements in my symptoms and the general policy of treating the patient before treating the scans, my rad onc and I agreed that right at this moment radiation is not needed. We will continue to let the chemo do its thing and we will watch my symptoms.
As for why my symptoms may have changed there isn't really a way of knowing. It is possible that my adrenal glands have adjusted to the low level of dexamethasone in my body and are functioning more normally and are producing cortisol again. Or I may have still been dealing with the side effects and inflammation from the radiation last August. The inflammation may have gone down which has helped to decrease all of my symptoms. We really don't know why the changes are happening but I was told to keep doing whatever I was doing. I'll get right on that ;-)
We chatted a little more and my rad onc told me that her office was right next door to my medical oncologist's office so they saw each other a lot and discussed their cases regularly. She went on to say that I was a very memorable patient so whenever my medical onc mentioned me my radiation onc always knew exactly who they were talking about. And apparently I'm memorable for good things and not bad things so that is always nice to hear.
I was also told that my medical onc was booking me for an abdominal and head CT to go with the MRI. If I was potentially going to undergo further radiation the abdominal CT especially is helpful to make sure there are no sites of progression that should also receive radiation.
I ended up being booked for my CT on Friday morning before I had to go to the Cancer Agency for my pre-chemo weigh in and medical oncology appointment. And I had to fit in getting my blood work done as well. A bit of a busy day.
The CT was uneventful and I was told the results should be ready Monday or Tuesday. I had my blood collected and a couple hours later it was off to the Cancer Agency.
I saw the same substitute oncologist as the 2 previous times and like the last visit this one was very smooth. My white cell count was over 5 and my neutrophils were 3.7. Yay for the Neupogen. The one thing of interest was that my hemoglobin was down to 107 g/L.......ohhhhhhhhh. I had noticed that I was feeling more fatigue and out of breath than I had ever been before and going up stairs or up slight hills were not fun. Turns out that at my hemoglobin level getting out of breath while going up a flight of stairs is pretty normal. Hopefully my hemoglobin won't get much lower and will also bounce back quickly once chemo is done.
The following Monday was Docetaxol #7. So close to the end!!!! It was almost uneventful. For some reason on the weekend my right arm puffed up.....I was wondering if my cheeks had gotten so full of water from my steroids that the water had moved into my arm. I wore my compression sleeve the night before treatment and it made the swelling to down enough in my hand my nurse could still get the IV in. I really prefer to not have IVs in my left hand since I am left handed. Other than that slight hitch everything was smooth. Yay!
On Tuesday I got an email from my medical oncologist that the CT scans showed no progressions and everything remained stable. Happy dance!
On Wednesday I started my Neupogen injections again. It is getting easier to inject myself. And I'm even getting competent at filling the syringe.
The following Sunday Keetah and Satori the pooch arrived for a visit. We managed to be super productive and get a food digester installed...... Full disclosure Keetah did most of the work so if anyone needs a digester installed I know a pro ;-) We also painted and put together an Adirondack chair. Only 2 more to go and I'll be ready for summer.
On Friday my guests left and on Saturday Laura arrived for the weekend. I got caught up on all the St. Paul's lab news. I miss you all, Labbies! We also hit the Royal BC Museum. If you are ever visiting Victoria it is definitely worth a visit.
Laura left Sunday afternoon after a great visit. I hope to be back in Vancouver in June.
Hmmmmmm........after all that busyness I don't remember what happened the next week. I think it must have been quiet until Thursday. Thursday was pre treatment weigh-in and oncology appointment. I saw another sub but it was the onc I saw during my hospital admission in December and I really liked him. I almost forgot to tell him about my swollen arm but I managed to turn on my brain eventually.
He was concerned that the swelling may be due to a blood clot so he was going to order an ultrasound of my arm with the hopes I would get in within a week. I guess he wasn't hugely concerned about a potential clot going anywhere vital.
About an hour after I got home my phone rang......could I come in for my ultrasound that afternoon? Umm, sure.
A couple hours later I trundled off to Vic General. Once there I didn't have to wait too long to get into the scan room. The tech did a bunch of pictures then told me she was going to show them to the radiologist. I didn't have to wait long again before they both appeared. The tech rescanned various areas so the radiologist could see the blood flow in action.
After about 10 minutes the radiologist said that the swelling appeared to be due to a blood clot in my right armpit. The clot did appear to be old....at least 3 weeks since that is when the swelling started. It was also in a peripheral vein as opposed to a deep vein. Because of those factors she said I didn't have to go to Emergency right then. She would try to contact the onc that had ordered the test, but it was 4 pm on a Thursday right before a long weekend. My official orders were I could go home but if I didn't hear from a doctor by tomorrow I had to contact someone to get new directions. Alrighty.
After wiping off all the fabulous ultrasound gel it was off to Mom and Dad's for a family dinner. My awesome Cousin Eh was in town for Easter weekend so there was a gathering that involved yummy food, good alcohol, and entertaining conversation as always.
On Friday I didn't hear from any doctorly types so I emailed my oncologist to see if I should just call the on call person. Of course that was my instruction so I put in a request to have the on call onc be paged. It felt like the good old days in the lab.....a super stat and paging the on call doc.....at least it wasn't because I had just found a new leukemia :-P
I didn't have to wait long before I was called back. The oncologist explained that because the clot was old and in a peripheral vein that does cause indecision about whether I should go on blood thinners. His feeling was that because I was getting symptoms in the name of a swollen arm in this case blood thinners would be the better way to go. But, he was okay with doing only a month rather than 3 months that is typically prescribed for clots in deep veins.
He then said the drug is expensive and I told him that wasn't a problem as I had Fair Pharmacare plus coverage through both my and Ian's work. I have actually maxed out both the Fair Pharmacare and my work deductibles because of the Neupogen and I get full coverage for my drugs now. Very fortunate.
The on call onc was happy to hear I had coverage and said that he would fax a prescription to the pharmacy right away. The trick would be getting a pharmacy that had the drug on hand. He thought that it might be tricky to get even 4 to cover the whole weekend without having to hit more than one pharmacy. Lucky for me I picked the right place and they had 7 on hand. The prescription was for 14 with a refill of 14. That way if the clot gets broken up quickly and the swelling goes away I don't have to be stuck with a whole bunch of drug left over.
Ian and I waited about an hour before going and picking up the drug. And lucky me yet again, it is a drug I inject into my abdomen. I really hope the clot goes away quick. I have enough holes in my stomach from cat claws when Orchid sits on me and kneads if I don't pat her enough I really don't need so many bonus punctures.
Saturday was Easter barbecue dinner. Ian made brisket. Yummy! The same gang from Thursday plus Sarah and Doug. Good food, good alcohol, good conversation.
Now it is Sunday night and I'm hopped on the high dose of steroid in preparation for my LAST dose of Docetaxol. So excited!!!!
Oh dear. I just realised I have dragged out this post for about 3 weeks. I hope it isn't too convoluted.
I will post again eventually.....hopefully with news that I am completely off the steroid. I survived 1 day on 1 day off so the next big test is 2 days in a row without steroid.
Happy Easter everyone! I hope you all enjoyed good food, good alcohol, and good conversation :-)
When my rad onc came in the exam room the first thing she said that the MRI was showing the skull lesion as being mostly stable with minor shrinkage away from the lining of the brain. Even with the stability because of the rather dramatic changes for the worse in my symptoms, as soon as she had my MRI she consulted with the stereo static radiation group.
At that point I practically jumped out of my chair and started waving my arms...... "wait, wait, things have changed again. My symptoms are now dramatically better than they have been in months. I cut my steroid down to 1 day off, 2 days on for the last 2 weeks with no problems. And my tongue! My tongue! It is smoothing out and I am not getting the weird aliens trying to punch their way out of my tongue! See???" And I stuck my tongue out at her...."See???"
My onc looked at my tongue and she was totally amazed at the changes.
And I explained how I felt like I had a whole head and my ear has popped a few times. I have probably not felt this good since September. Needless to say my onc was totally thrilled with what was going on.
With all the symptom news out of the way we moved on to what the stereo static group said. This group does a much more specific targeting of radiation sites than is routinely done with radiation. Stereo static radiation is typically done at sites that are at higher risk of damage from radiation or at sites that have been previously irradiated and are now close to the maximum threshold of allowable radiation. In my case both situations apply.
The lesion is 8 mm away from my spinal cord which is a rather delicate piece of my anatomy. Plus, with previous radiation I was hit from both the left and right side so I have reached my maximum allowable dosage of radiation for my spinal cord in that area.
With all of that the stereo specific group was confident that they could target the lesion by only going at it from the right side and were ready to move to a planning session. At the actual radiation sessions I would again be strapped to the table with the face mask and then immediately prior to each session I would have a CT scan done to ensure I was in EXACTLY the right position. No pressure on anyone :-P
Because of the improvements in my symptoms and the general policy of treating the patient before treating the scans, my rad onc and I agreed that right at this moment radiation is not needed. We will continue to let the chemo do its thing and we will watch my symptoms.
As for why my symptoms may have changed there isn't really a way of knowing. It is possible that my adrenal glands have adjusted to the low level of dexamethasone in my body and are functioning more normally and are producing cortisol again. Or I may have still been dealing with the side effects and inflammation from the radiation last August. The inflammation may have gone down which has helped to decrease all of my symptoms. We really don't know why the changes are happening but I was told to keep doing whatever I was doing. I'll get right on that ;-)
We chatted a little more and my rad onc told me that her office was right next door to my medical oncologist's office so they saw each other a lot and discussed their cases regularly. She went on to say that I was a very memorable patient so whenever my medical onc mentioned me my radiation onc always knew exactly who they were talking about. And apparently I'm memorable for good things and not bad things so that is always nice to hear.
I was also told that my medical onc was booking me for an abdominal and head CT to go with the MRI. If I was potentially going to undergo further radiation the abdominal CT especially is helpful to make sure there are no sites of progression that should also receive radiation.
I ended up being booked for my CT on Friday morning before I had to go to the Cancer Agency for my pre-chemo weigh in and medical oncology appointment. And I had to fit in getting my blood work done as well. A bit of a busy day.
The CT was uneventful and I was told the results should be ready Monday or Tuesday. I had my blood collected and a couple hours later it was off to the Cancer Agency.
I saw the same substitute oncologist as the 2 previous times and like the last visit this one was very smooth. My white cell count was over 5 and my neutrophils were 3.7. Yay for the Neupogen. The one thing of interest was that my hemoglobin was down to 107 g/L.......ohhhhhhhhh. I had noticed that I was feeling more fatigue and out of breath than I had ever been before and going up stairs or up slight hills were not fun. Turns out that at my hemoglobin level getting out of breath while going up a flight of stairs is pretty normal. Hopefully my hemoglobin won't get much lower and will also bounce back quickly once chemo is done.
The following Monday was Docetaxol #7. So close to the end!!!! It was almost uneventful. For some reason on the weekend my right arm puffed up.....I was wondering if my cheeks had gotten so full of water from my steroids that the water had moved into my arm. I wore my compression sleeve the night before treatment and it made the swelling to down enough in my hand my nurse could still get the IV in. I really prefer to not have IVs in my left hand since I am left handed. Other than that slight hitch everything was smooth. Yay!
On Tuesday I got an email from my medical oncologist that the CT scans showed no progressions and everything remained stable. Happy dance!
On Wednesday I started my Neupogen injections again. It is getting easier to inject myself. And I'm even getting competent at filling the syringe.
The following Sunday Keetah and Satori the pooch arrived for a visit. We managed to be super productive and get a food digester installed...... Full disclosure Keetah did most of the work so if anyone needs a digester installed I know a pro ;-) We also painted and put together an Adirondack chair. Only 2 more to go and I'll be ready for summer.
On Friday my guests left and on Saturday Laura arrived for the weekend. I got caught up on all the St. Paul's lab news. I miss you all, Labbies! We also hit the Royal BC Museum. If you are ever visiting Victoria it is definitely worth a visit.
Laura left Sunday afternoon after a great visit. I hope to be back in Vancouver in June.
Hmmmmmm........after all that busyness I don't remember what happened the next week. I think it must have been quiet until Thursday. Thursday was pre treatment weigh-in and oncology appointment. I saw another sub but it was the onc I saw during my hospital admission in December and I really liked him. I almost forgot to tell him about my swollen arm but I managed to turn on my brain eventually.
He was concerned that the swelling may be due to a blood clot so he was going to order an ultrasound of my arm with the hopes I would get in within a week. I guess he wasn't hugely concerned about a potential clot going anywhere vital.
About an hour after I got home my phone rang......could I come in for my ultrasound that afternoon? Umm, sure.
A couple hours later I trundled off to Vic General. Once there I didn't have to wait too long to get into the scan room. The tech did a bunch of pictures then told me she was going to show them to the radiologist. I didn't have to wait long again before they both appeared. The tech rescanned various areas so the radiologist could see the blood flow in action.
After about 10 minutes the radiologist said that the swelling appeared to be due to a blood clot in my right armpit. The clot did appear to be old....at least 3 weeks since that is when the swelling started. It was also in a peripheral vein as opposed to a deep vein. Because of those factors she said I didn't have to go to Emergency right then. She would try to contact the onc that had ordered the test, but it was 4 pm on a Thursday right before a long weekend. My official orders were I could go home but if I didn't hear from a doctor by tomorrow I had to contact someone to get new directions. Alrighty.
After wiping off all the fabulous ultrasound gel it was off to Mom and Dad's for a family dinner. My awesome Cousin Eh was in town for Easter weekend so there was a gathering that involved yummy food, good alcohol, and entertaining conversation as always.
On Friday I didn't hear from any doctorly types so I emailed my oncologist to see if I should just call the on call person. Of course that was my instruction so I put in a request to have the on call onc be paged. It felt like the good old days in the lab.....a super stat and paging the on call doc.....at least it wasn't because I had just found a new leukemia :-P
I didn't have to wait long before I was called back. The oncologist explained that because the clot was old and in a peripheral vein that does cause indecision about whether I should go on blood thinners. His feeling was that because I was getting symptoms in the name of a swollen arm in this case blood thinners would be the better way to go. But, he was okay with doing only a month rather than 3 months that is typically prescribed for clots in deep veins.
He then said the drug is expensive and I told him that wasn't a problem as I had Fair Pharmacare plus coverage through both my and Ian's work. I have actually maxed out both the Fair Pharmacare and my work deductibles because of the Neupogen and I get full coverage for my drugs now. Very fortunate.
The on call onc was happy to hear I had coverage and said that he would fax a prescription to the pharmacy right away. The trick would be getting a pharmacy that had the drug on hand. He thought that it might be tricky to get even 4 to cover the whole weekend without having to hit more than one pharmacy. Lucky for me I picked the right place and they had 7 on hand. The prescription was for 14 with a refill of 14. That way if the clot gets broken up quickly and the swelling goes away I don't have to be stuck with a whole bunch of drug left over.
Ian and I waited about an hour before going and picking up the drug. And lucky me yet again, it is a drug I inject into my abdomen. I really hope the clot goes away quick. I have enough holes in my stomach from cat claws when Orchid sits on me and kneads if I don't pat her enough I really don't need so many bonus punctures.
Saturday was Easter barbecue dinner. Ian made brisket. Yummy! The same gang from Thursday plus Sarah and Doug. Good food, good alcohol, good conversation.
Now it is Sunday night and I'm hopped on the high dose of steroid in preparation for my LAST dose of Docetaxol. So excited!!!!
Oh dear. I just realised I have dragged out this post for about 3 weeks. I hope it isn't too convoluted.
I will post again eventually.....hopefully with news that I am completely off the steroid. I survived 1 day on 1 day off so the next big test is 2 days in a row without steroid.
Happy Easter everyone! I hope you all enjoyed good food, good alcohol, and good conversation :-)
Wednesday, 24 February 2016
Chaos 2016 or My First Experience with Questionable Healthcare
2016 started off with a weekend trip to Winnipeg to see my wonderful cousin Ilana marry her sweetheart. The bride was beautiful, the groom handsome, the flower girls were wonderful and thanks to Carly, Justin, Nick, Rick, Sarah, and Tammy I had some fabulous shoes.....
The inscription on the sole says: LOOK OUT for hidden gifts and surprises
And the sole: Always choose love signed John Fluevog
Such wise words for a pair of shoes!
Winnipeg behaved by giving us beautiful sunshine and balmy temps.....yes I may be from the west coast but even I know -8 C is fabulous winter weather for the prairies.
I reconnected with cousins I hadn't seen for 20 years (hard to believe we are all old enough to say that) and all in all it was a nice little break.
I arrived home Sunday evening and Monday morning it was time for Docetaxol #4. Treatment was uneventful which is always best. The only excitement was a visit from the teaching nurse to show me how to give myself my Neupogen injections.
Neupogen is a drug used to boost my bone marrow into producing more neutrophils (the white blood cells that fight against bacterial infections). The reason for the injections is to prevent another occurrence of the febrile neutropenia I had in December even though it really wasn't febrile neutropenia. It was more bad timing on my part, I had a cold with a bit of a fever right as my neutrophil count went to zero. Ah well, now we are just following protocol and I get Neupogen shots.
Doing the injections is pretty easy although as a lab tech I find it a little odd to be putting something in rather than taking out blood :-P
Day 3 after treatment the joint pain started but wasn't too bad. It was also my first Neupogen injection. No problems yay! I had to do the injections for 5 days in a row and all was smooth until day 5. I woke up that day to the worst joint and bone pain I had ever had. When I got out of bed to get some Tylenol I had the weirdest feeling that my pelvis was hollow and would not support the weight of my upper body. As I stood I was half expecting my torso to just crush through my pelvis and hit the floor. Weirdest. Feeling. Ever. Fortunately if didn't happen and now thinking about it makes me laugh because it sounds so ridiculous.
Day 5 of the injections was Sunday and when I woke up Monday basically all the pain was gone. Over the next 2 weeks until my next treatment things were okay. I even forgot my steroid dose a couple times and survived with only a mild feeling of ickiness.
The Friday before my next treatment was my routine oncology appointment. The primary purpose of the appointment is my official weigh in because my chemo dose is based on my body surface area. For this appointment I was scheduled to see a general oncologist as my regular oncologist was either swamped with patients or away and since my appointments are usually boring seeing a sub is no big deal. Until this time.
I have been dealing with cancer and the BC Healthcare system for just over 3 1/2 years. During all this time I have not once had a single concern about the quality of the healthcare I have received and in general I have always been extremely well looked after. In a 15 minute appointment that all changed and I now wonder just how other patients are treated routinely and what quality of care they actually receive.
Normally if I am not seeing my regular oncologist she will reach out to the substitute beforehand to make sure the sub knows what our treatment plan is. Currently the treatment plan is for me to remain on the full dose of Docetaxol and for 5 days I will give myself Neupogen shots.
When I met with the substitute oncologist she immediately told me that just prior to my appointment she had met with the breast cancer specialist on call for the day and it had been decided that I would no longer get Docetaxol and I would go back to Paclitaxol which I had been on my first time through chemo. WHAT???????????
The reason was that Paclitaxol is normally tolerated much better than Docetaxol and generally neutrophil counts don't drop as low. Since I had dealt with a febrile neutropenia episode in December it seemed to be a good idea to switch chemos. Plus, the plan of using Neupogen as a part of my treatment plan is not standard protocol for metastatic breast cancer patients, particularly since Neupogen can cause cancer cells to grow. WHAT?????????????
The oncologist then went on to explain that because I was being switched to Paclitaxol my pre-meds would change. I would no longer have to do the 3 days of high dose steroid around treatment day, okay no big deal there. Also, because I would be receiving Bendryl immediately prior to the Paclitaxol I would require someone to drive me home. Oh, and it will add 2 1/2 hours to my infusion time. (Currently treatment takes about 3 hours)
The oncologist then went on to say that there was one other possible treatment option. I could stay on Docetaxol but the dose would be dropped from 75 mg/m2 to 65 mg/m2 and the Neupogen would be stopped.
At that point I was so flabbergasted I didn't really know what to say so I started with "I am not switching to paclitaxol and here are my reasons...."
1. I found Paclitaxol harder to tolerate than Docetaxol. My nails were horribly damaged, I had blisters on my feet. My neutophil count always dropped to zero.
2. I am not going to depend on someone to drive me home. I like my independence thank you very much.
3. No way in hell am I spending an extra 2 1/2 hours getting infused.
I didn't say it but I was thinking that if I showed up for treatment on the Monday and it was Paclitaxol I was walking out. I was not in the mood to be blindsided with major treatment changes by someone who has never met or talked to me before.
The oncologist said okay she would run that by the specialist on call so I should just wait a few minutes. The onc left the room and came back pretty quickly. When the specialist was told my opinion his response was "okay, whatever she wants to do."
At that point I should have put my foot down and said that what I really wanted was a full dose of Docetaxol with the Neupogen injections but I just wasn't up for what felt like would be an actual battle.
At that point it was agreed, I would receive Docetaxol on the Monday at the 65 mg level. I was not happy but I was ready to go home. And I knew I had to get in touch with my regular oncologist to make sure we got back on track after this weird blip.
So the two major reasons for why my treatment should be changed from Docetaxol to Paclitaxol were 1. Neupogen is not standard protocol for metastatic breast cancer patients and 2. Neupogen can cause cancer cells to grow. I say it again, WHAT???????
I am a part of a very active metastatic breast cancer support group and needless to say Neupogen is pretty standard protocol all over North America and it would probably be news to everyone that Neupogen may actually make cancer grow. On top of that, if Neupogen was such a risk why did both my regular oncologist and the oncologist I dealt with while in hospital both add Neupogen to my treatment? Talk about apples on one hand and ground beef on the other. These guys are so far apart we aren't even comparing fruit.
To resolve part of this issue for myself, the BC Cancer Agency is sufficiently high tech that it has all of the chemotherapy standard protocols available on line. How very convenient for me. So I did a quick search through the advanced breast cancer list and found my Docetaxol protocol and shocker! What did I find? Neupogen is a standard response in cases of febrile neutropenia or other situations where the neutrophil count drops below a certain level and does not return to a high enough level prior to the next treatment.
And wow, I am getting royally pissed off all over again just thinking about this. Regardless of what either oncologist's intention had been by saying Neupogen was not standard protocol I feel like I have been fed a bald faced lie and I was just supposed to swallow it.
Oh, and to make it even better, standard protocol in the more extreme cases where a full dose can not be tolerated, the dose is cut by 25%. So where on earth did the whole 65 instead of 75 mg come from? Was that how much change the onc had in his pocket that day?
And this leads me back to wondering about how other patients are treated, particularly in Victoria where the population is older and likely much less tech savvy or just unwilling to question the gospel of the physician. I fought to get what I felt was the better of 2 bad choices but even I didn't stand up for myself fully to get exactly what I wanted because I was too tired to have a fight. Also, I agreed to the treatment already knowing that I would be contacting my regular oncologist and we would get back to our plan the next time round.
Now for the bit about Neupogen making cancer cells grow. Huh?
I emailed my oncologist on the Tuesday prior to my next oncology appointment (and for the record I was booked to see the same substitute as the previous time. I was tempted to phone the Cancer Agency and say that I refused to see her again but I decided that wasn't necessary. I would be going into the appointment fully prepared for the possibility of randomness and I wasn't going to back down from getting the full dose of Docetaxol with Neupogen from that point on.) and let her know what had happened at my previous appointment. I asked about the whole cancer cells growing thing. And I told her that I had really struggled with my Bell's symptoms for the last couple weeks. My tongue was much worse and if I delayed my steroid dose by even a few hours I started getting a headache and nausea. All in all the two weeks really sucked.
As always my oncologist responded very quickly. Turns out the "can make cancer cells grow" is a loose translation for: there is a theoretical possibility that because Neupogen stimulates the bone marrow to produce neutrophils faster, the Neupogen could actually overstimulate the bone marrow to the point a leukemia is induced. Ahhhhhhhh.
So you're concerned that I might get cancer while on my cancer treatment. Got it.
My oncologist went on to say that she has never had it happen to one of her patients and she does not know of any colleague that has ever had it happen to any of their patients either. So we really are talking about a theoretical possibility. Hello! Terminal cancer. I think I have bigger problems. And there's that bus I could accidentally walk in front of tomorrow while walking and texting.
With the growing cancer cells all cleared up my oncologist and I returned to the page we have both been on for a while now, my next treatment would be full dose Docetaxol and Neupogen injections. Phew.
My oncologist also said that she had been in touch with my radiation oncologist about the fact that my Bell's symptoms had gotten worse. Most likely a brain scan of some sort would be suggested but my onc would wait until she heard the recommendation of my rad onc after I had been assessed.
On Thursday I was contacted by my rad onc's office and I was booked to see my rad onc after my oncology appointment the next day.
On Friday I had my official oncology appointment and weigh in. It was the same substitute oncologist as the previous time. When she came in she immediately apologised for all the confusion at my previous appointment. She had been in contact with my regular oncologist and she was aware that the treatment plan for Monday was a full dose of Docetaxol with the Neupogen shots. Phew again. Everything is under control.
At that point I was ready to move past (sort of) the previous appointment and start over with this oncologist when she unfortunately opened her mouth again and said "part of why I didn't want you to have the Neupogen shots was because they are expensive and I was concerned you didn't have coverage and I didn't want to ask". EXCUSE ME?????? You didn't want to ask if I had coverage to ensure I was getting the most appropriate treatment???
Just a little background on the patient cost of Neupogen: 5 days like I do is about $1000 before extended medical kicks in. BC has something called Fair Pharamacare that all BC residents should be enrolled in. This program covers 75% of drug costs after a deductible is paid. The size of a patient's deductible is dependent on family income.
The manufacturer of Neupogen also runs a program to assist patients with the cost called the Victory Program. Within 2 days of receiving my prescription for Neupogen I was contacted by the Victory Program. The rep asked for all my provincial health info as well as my extended health info. I have extended health through both my work and Ian's. The rep then contacted my extended health insurer and then we had a conference call with a Fair Pharmacare rep. Within a day I knew the Victory Program would not give me assistance as I had 100% coverage through extended health.
The substitute oncologist should have at minimum known about the Victory Program. I have known about it for several years.....definitely since before I ever started this cancer adventure. And the fact that she didn't want to ask about my coverage when I had already been through one course of Neopugen? That just seems downright odd. Coverage and cost is a pretty basic part of healthcare. To not ask about it seems inappropriate. Oops. I think I just dropped my opinion of her again. Can you see it over there on the floor?
Anyhoo, I managed to escape the appointment feeling only mildly aggravated. I kicked around the Cancer Agency, snacking on a HoneyBun (if you don't know what they are Google it. They are super yummy. I have tried making them but I have not been able to replicate the softness of the dough yet), waiting for my radiation oncologist appointment.
My radiation oncologist I just love. I'm not sure if I love her or my regular oncologist more, they are both so fabulous. During the appointment I explained how my symptoms had been worse the last couple weeks and I absolutely could not miss a steroid dose. It was decided that I should go in for a brain MRI. Based on the results my rad onc would see if it would be possible to do anymore radiation at the site. At this point she really doesn't know. It may be that a small dose may be possible but whether such a dose would be of any value isn't known. I am just going with the theory that no more radiation is possible and we will wait for the MRI results before doing any more thinking on the whole issue.
After my appointments I met my Aunt Gwen and we had coffee and then saw Deadpool. Some gratuitous sex, gratuitous violence, and a lot of blood spray. A wonderful way to wash away the memories of the first half of the day!! :-)
Okay, I promise this post is almost done.
Monday I had treatment. Smooth yet again. Yay!
Tuesday I was contacted by the Vic General MRI department. There had been a cancellation. Could I be there in 15 minutes? Umm....no. Fine, we can book you for 2:15 instead of 2:00 can you be there in half an hour? Umm....okay? So, of I went for my MRI. And I even made it on time. Results should be available within 2 and 7 days.
Wednesday I skipped my steroid dose to no ill effects, started my Neupogen shots, and Nick came for a visit. Ian and Nick spent the next couple days doing manly Central Saanich things such as drinking beer, playing with chainsaws, and burning stuff outside.
Thursday my joint pain started. No better and no worse than usual. Saturday Nick left. Sunday, day 5 of Neupogen was definitely a bad pain day. But not as bad as the first time and definitely no feeling of hollow pelvis. Thank goodness!!
Monday I again skipped my steroid dose and.........I had probably the best day I have had in months :-) No nausea, no headaches, my ear even popped for about 20 seconds (as a part of my deafness as a symptom my ear has a constant feeling of being totally plugged, any time it pops,which it hadn't done since December, I get a few seconds of pressure release and even a little hearing).
The absolute most amazing thing though is about the area around my ear. For the last several months..... maybe since about September I have had this sensation that the portion of my head around my right ear and down towards the base of my skull is missing. The peripheral nerves still work so if I touch the area there is sensation but I guess because of the damaged cranial nerve I have no general sensation that the area is actually present. I admit it, when I touch my head there I am always a little surprised that my hand actually hits something. It really feels like I'm missing half my head. Anyway, on Monday I had the vaguest sensation that in fact my head may actually be intact. It is now Wednesday and I still have the feeling. So absolutely fabulous!!! I really hope this continues, this is the most normal I have felt in the last 7 months and I would really love to have a few more days like this.
Alrighty, now I'm done :-)
Almost.....no MRI results yet but I'll post when I hear something.
These shoes really were meant for a wedding guest. Here is a little sole art:
 |
| Ilana & Shawn, January 2, 2016 Ian & Sheryl, April 27, 2006 |
And the sole: Always choose love signed John Fluevog
Such wise words for a pair of shoes!
Winnipeg behaved by giving us beautiful sunshine and balmy temps.....yes I may be from the west coast but even I know -8 C is fabulous winter weather for the prairies.
I reconnected with cousins I hadn't seen for 20 years (hard to believe we are all old enough to say that) and all in all it was a nice little break.
I arrived home Sunday evening and Monday morning it was time for Docetaxol #4. Treatment was uneventful which is always best. The only excitement was a visit from the teaching nurse to show me how to give myself my Neupogen injections.
Neupogen is a drug used to boost my bone marrow into producing more neutrophils (the white blood cells that fight against bacterial infections). The reason for the injections is to prevent another occurrence of the febrile neutropenia I had in December even though it really wasn't febrile neutropenia. It was more bad timing on my part, I had a cold with a bit of a fever right as my neutrophil count went to zero. Ah well, now we are just following protocol and I get Neupogen shots.
Doing the injections is pretty easy although as a lab tech I find it a little odd to be putting something in rather than taking out blood :-P
Day 3 after treatment the joint pain started but wasn't too bad. It was also my first Neupogen injection. No problems yay! I had to do the injections for 5 days in a row and all was smooth until day 5. I woke up that day to the worst joint and bone pain I had ever had. When I got out of bed to get some Tylenol I had the weirdest feeling that my pelvis was hollow and would not support the weight of my upper body. As I stood I was half expecting my torso to just crush through my pelvis and hit the floor. Weirdest. Feeling. Ever. Fortunately if didn't happen and now thinking about it makes me laugh because it sounds so ridiculous.
Day 5 of the injections was Sunday and when I woke up Monday basically all the pain was gone. Over the next 2 weeks until my next treatment things were okay. I even forgot my steroid dose a couple times and survived with only a mild feeling of ickiness.
The Friday before my next treatment was my routine oncology appointment. The primary purpose of the appointment is my official weigh in because my chemo dose is based on my body surface area. For this appointment I was scheduled to see a general oncologist as my regular oncologist was either swamped with patients or away and since my appointments are usually boring seeing a sub is no big deal. Until this time.
I have been dealing with cancer and the BC Healthcare system for just over 3 1/2 years. During all this time I have not once had a single concern about the quality of the healthcare I have received and in general I have always been extremely well looked after. In a 15 minute appointment that all changed and I now wonder just how other patients are treated routinely and what quality of care they actually receive.
Normally if I am not seeing my regular oncologist she will reach out to the substitute beforehand to make sure the sub knows what our treatment plan is. Currently the treatment plan is for me to remain on the full dose of Docetaxol and for 5 days I will give myself Neupogen shots.
When I met with the substitute oncologist she immediately told me that just prior to my appointment she had met with the breast cancer specialist on call for the day and it had been decided that I would no longer get Docetaxol and I would go back to Paclitaxol which I had been on my first time through chemo. WHAT???????????
The reason was that Paclitaxol is normally tolerated much better than Docetaxol and generally neutrophil counts don't drop as low. Since I had dealt with a febrile neutropenia episode in December it seemed to be a good idea to switch chemos. Plus, the plan of using Neupogen as a part of my treatment plan is not standard protocol for metastatic breast cancer patients, particularly since Neupogen can cause cancer cells to grow. WHAT?????????????
The oncologist then went on to explain that because I was being switched to Paclitaxol my pre-meds would change. I would no longer have to do the 3 days of high dose steroid around treatment day, okay no big deal there. Also, because I would be receiving Bendryl immediately prior to the Paclitaxol I would require someone to drive me home. Oh, and it will add 2 1/2 hours to my infusion time. (Currently treatment takes about 3 hours)
The oncologist then went on to say that there was one other possible treatment option. I could stay on Docetaxol but the dose would be dropped from 75 mg/m2 to 65 mg/m2 and the Neupogen would be stopped.
At that point I was so flabbergasted I didn't really know what to say so I started with "I am not switching to paclitaxol and here are my reasons...."
1. I found Paclitaxol harder to tolerate than Docetaxol. My nails were horribly damaged, I had blisters on my feet. My neutophil count always dropped to zero.
2. I am not going to depend on someone to drive me home. I like my independence thank you very much.
3. No way in hell am I spending an extra 2 1/2 hours getting infused.
I didn't say it but I was thinking that if I showed up for treatment on the Monday and it was Paclitaxol I was walking out. I was not in the mood to be blindsided with major treatment changes by someone who has never met or talked to me before.
The oncologist said okay she would run that by the specialist on call so I should just wait a few minutes. The onc left the room and came back pretty quickly. When the specialist was told my opinion his response was "okay, whatever she wants to do."
At that point I should have put my foot down and said that what I really wanted was a full dose of Docetaxol with the Neupogen injections but I just wasn't up for what felt like would be an actual battle.
At that point it was agreed, I would receive Docetaxol on the Monday at the 65 mg level. I was not happy but I was ready to go home. And I knew I had to get in touch with my regular oncologist to make sure we got back on track after this weird blip.
So the two major reasons for why my treatment should be changed from Docetaxol to Paclitaxol were 1. Neupogen is not standard protocol for metastatic breast cancer patients and 2. Neupogen can cause cancer cells to grow. I say it again, WHAT???????
I am a part of a very active metastatic breast cancer support group and needless to say Neupogen is pretty standard protocol all over North America and it would probably be news to everyone that Neupogen may actually make cancer grow. On top of that, if Neupogen was such a risk why did both my regular oncologist and the oncologist I dealt with while in hospital both add Neupogen to my treatment? Talk about apples on one hand and ground beef on the other. These guys are so far apart we aren't even comparing fruit.
To resolve part of this issue for myself, the BC Cancer Agency is sufficiently high tech that it has all of the chemotherapy standard protocols available on line. How very convenient for me. So I did a quick search through the advanced breast cancer list and found my Docetaxol protocol and shocker! What did I find? Neupogen is a standard response in cases of febrile neutropenia or other situations where the neutrophil count drops below a certain level and does not return to a high enough level prior to the next treatment.
And wow, I am getting royally pissed off all over again just thinking about this. Regardless of what either oncologist's intention had been by saying Neupogen was not standard protocol I feel like I have been fed a bald faced lie and I was just supposed to swallow it.
Oh, and to make it even better, standard protocol in the more extreme cases where a full dose can not be tolerated, the dose is cut by 25%. So where on earth did the whole 65 instead of 75 mg come from? Was that how much change the onc had in his pocket that day?
And this leads me back to wondering about how other patients are treated, particularly in Victoria where the population is older and likely much less tech savvy or just unwilling to question the gospel of the physician. I fought to get what I felt was the better of 2 bad choices but even I didn't stand up for myself fully to get exactly what I wanted because I was too tired to have a fight. Also, I agreed to the treatment already knowing that I would be contacting my regular oncologist and we would get back to our plan the next time round.
Now for the bit about Neupogen making cancer cells grow. Huh?
I emailed my oncologist on the Tuesday prior to my next oncology appointment (and for the record I was booked to see the same substitute as the previous time. I was tempted to phone the Cancer Agency and say that I refused to see her again but I decided that wasn't necessary. I would be going into the appointment fully prepared for the possibility of randomness and I wasn't going to back down from getting the full dose of Docetaxol with Neupogen from that point on.) and let her know what had happened at my previous appointment. I asked about the whole cancer cells growing thing. And I told her that I had really struggled with my Bell's symptoms for the last couple weeks. My tongue was much worse and if I delayed my steroid dose by even a few hours I started getting a headache and nausea. All in all the two weeks really sucked.
As always my oncologist responded very quickly. Turns out the "can make cancer cells grow" is a loose translation for: there is a theoretical possibility that because Neupogen stimulates the bone marrow to produce neutrophils faster, the Neupogen could actually overstimulate the bone marrow to the point a leukemia is induced. Ahhhhhhhh.
So you're concerned that I might get cancer while on my cancer treatment. Got it.
My oncologist went on to say that she has never had it happen to one of her patients and she does not know of any colleague that has ever had it happen to any of their patients either. So we really are talking about a theoretical possibility. Hello! Terminal cancer. I think I have bigger problems. And there's that bus I could accidentally walk in front of tomorrow while walking and texting.
With the growing cancer cells all cleared up my oncologist and I returned to the page we have both been on for a while now, my next treatment would be full dose Docetaxol and Neupogen injections. Phew.
My oncologist also said that she had been in touch with my radiation oncologist about the fact that my Bell's symptoms had gotten worse. Most likely a brain scan of some sort would be suggested but my onc would wait until she heard the recommendation of my rad onc after I had been assessed.
On Thursday I was contacted by my rad onc's office and I was booked to see my rad onc after my oncology appointment the next day.
On Friday I had my official oncology appointment and weigh in. It was the same substitute oncologist as the previous time. When she came in she immediately apologised for all the confusion at my previous appointment. She had been in contact with my regular oncologist and she was aware that the treatment plan for Monday was a full dose of Docetaxol with the Neupogen shots. Phew again. Everything is under control.
At that point I was ready to move past (sort of) the previous appointment and start over with this oncologist when she unfortunately opened her mouth again and said "part of why I didn't want you to have the Neupogen shots was because they are expensive and I was concerned you didn't have coverage and I didn't want to ask". EXCUSE ME?????? You didn't want to ask if I had coverage to ensure I was getting the most appropriate treatment???
Just a little background on the patient cost of Neupogen: 5 days like I do is about $1000 before extended medical kicks in. BC has something called Fair Pharamacare that all BC residents should be enrolled in. This program covers 75% of drug costs after a deductible is paid. The size of a patient's deductible is dependent on family income.
The manufacturer of Neupogen also runs a program to assist patients with the cost called the Victory Program. Within 2 days of receiving my prescription for Neupogen I was contacted by the Victory Program. The rep asked for all my provincial health info as well as my extended health info. I have extended health through both my work and Ian's. The rep then contacted my extended health insurer and then we had a conference call with a Fair Pharmacare rep. Within a day I knew the Victory Program would not give me assistance as I had 100% coverage through extended health.
The substitute oncologist should have at minimum known about the Victory Program. I have known about it for several years.....definitely since before I ever started this cancer adventure. And the fact that she didn't want to ask about my coverage when I had already been through one course of Neopugen? That just seems downright odd. Coverage and cost is a pretty basic part of healthcare. To not ask about it seems inappropriate. Oops. I think I just dropped my opinion of her again. Can you see it over there on the floor?
Anyhoo, I managed to escape the appointment feeling only mildly aggravated. I kicked around the Cancer Agency, snacking on a HoneyBun (if you don't know what they are Google it. They are super yummy. I have tried making them but I have not been able to replicate the softness of the dough yet), waiting for my radiation oncologist appointment.
My radiation oncologist I just love. I'm not sure if I love her or my regular oncologist more, they are both so fabulous. During the appointment I explained how my symptoms had been worse the last couple weeks and I absolutely could not miss a steroid dose. It was decided that I should go in for a brain MRI. Based on the results my rad onc would see if it would be possible to do anymore radiation at the site. At this point she really doesn't know. It may be that a small dose may be possible but whether such a dose would be of any value isn't known. I am just going with the theory that no more radiation is possible and we will wait for the MRI results before doing any more thinking on the whole issue.
After my appointments I met my Aunt Gwen and we had coffee and then saw Deadpool. Some gratuitous sex, gratuitous violence, and a lot of blood spray. A wonderful way to wash away the memories of the first half of the day!! :-)
Okay, I promise this post is almost done.
Monday I had treatment. Smooth yet again. Yay!
Tuesday I was contacted by the Vic General MRI department. There had been a cancellation. Could I be there in 15 minutes? Umm....no. Fine, we can book you for 2:15 instead of 2:00 can you be there in half an hour? Umm....okay? So, of I went for my MRI. And I even made it on time. Results should be available within 2 and 7 days.
Wednesday I skipped my steroid dose to no ill effects, started my Neupogen shots, and Nick came for a visit. Ian and Nick spent the next couple days doing manly Central Saanich things such as drinking beer, playing with chainsaws, and burning stuff outside.
Thursday my joint pain started. No better and no worse than usual. Saturday Nick left. Sunday, day 5 of Neupogen was definitely a bad pain day. But not as bad as the first time and definitely no feeling of hollow pelvis. Thank goodness!!
Monday I again skipped my steroid dose and.........I had probably the best day I have had in months :-) No nausea, no headaches, my ear even popped for about 20 seconds (as a part of my deafness as a symptom my ear has a constant feeling of being totally plugged, any time it pops,which it hadn't done since December, I get a few seconds of pressure release and even a little hearing).
The absolute most amazing thing though is about the area around my ear. For the last several months..... maybe since about September I have had this sensation that the portion of my head around my right ear and down towards the base of my skull is missing. The peripheral nerves still work so if I touch the area there is sensation but I guess because of the damaged cranial nerve I have no general sensation that the area is actually present. I admit it, when I touch my head there I am always a little surprised that my hand actually hits something. It really feels like I'm missing half my head. Anyway, on Monday I had the vaguest sensation that in fact my head may actually be intact. It is now Wednesday and I still have the feeling. So absolutely fabulous!!! I really hope this continues, this is the most normal I have felt in the last 7 months and I would really love to have a few more days like this.
Alrighty, now I'm done :-)
Almost.....no MRI results yet but I'll post when I hear something.
Tuesday, 29 December 2015
Christmas Fun 2015
Last year for Christmas I spent a lot of time running around to medical appointments and getting biopsies done. This year has been a little different.
Two days after my fantastic birthday party I had my second cycle of chemo. Now that I know to stay on my low dose steroid, the primary side effect was joint pain and it was easy to control with Tylenol.
On Monday of the second week of December I was in for abdominal and head CT scans to see if the first couple rounds of chemo were having any effect. A
Tuesday was chemo cycle #3. Things were going well and the following weekend I popped to Vancouver to deliver a few gifts and meet the latest baby born amongst my circle of friends......such a cutie.
I started getting a scratchy throat but didn't think much of it as I had gotten a scratchy throat for both of the first 2 rounds as well. I had to return to Victoria on Wednesday evening for an appointment with my oncologist Thursday morning.
On Thursday morning just before Ian left for work he told me that I felt rather warm. I didn't feel 100% but I didn't feel too bad. Just before I left for my appointment I took my temperature.......uh oh.....38.5 C. I can't remember what temperature I was supposed to start panicking at but I figured I would notified the nurse when I arrived at the Cancer Agency.
As I was checking in for my appointment I saw my onc and told her I had a fever. She immediately called a nurse over to put me in a room and check my vitals. My heart rate was 145 and my temp was 38.2 C. I was put in another room with a more comfy lounging chair and I waited for my onc.
When my onc came in she told me that I would be moved over to the clinic nearby and I would get my bloodwork done and I would be given some IV fluids. They would monitor my temp and I may get admitted. Ugh. We also went over my CT results. The lesion on my skull is showing signs of shrinking as is the spot on my lung..... I guess that means it isn't radiation scarring. And the met on my rib continues to show signs of healing. Maybe it will go away completely some day. All in all it appears that the chemo is doing its thing.
After my appointment I was moved to a bed in the clinic area. My temp was checked again and it was up to 39.2 C. Next was bloodwork including bloood cultures then I was sent to radiology for a chest x-ray to check for pneumonia. Once back in my bed an IV was put in and saline was pumped into me.
After a while a clinic doc came in and told me that I was going to be admitted and I would get some IV antibiotics. Hopefully I would get to go home in 2 days. Ugh again. Ian came from work to see me around then and I sent him home to check on the pets.
Eventually I was moved to the oncology ward at the Royal Jubilee. The Cancer Agency sits on the grounds of the Jub and there is a convenient tunnel connecting the facilities making movement of patients pretty easy. I had been very unenthusiastic about getting admitted but I ended up in a private room since I was on reverse isolation.......that means everyone has to mask and glove up to protect me instead of masking and gloving to protect themselves from what ever nastiness I have......and I even had free TV for a couple days. The previous patient had been planning to be in hospital longer and had payed in advance for the TV. A nice little Christmas present.
Once I was comfy in my room the IV antibiotics were run and then it was more saline. In the evening I was told that so far my blood cultures were negative so they were going to switch me to oral antibiotics. No surprise about the negative results so far as I felt like I had a cold not something bacterial.
Friday was pretty dull and involved a lot of switching between all the major news channels. Regular daytime TV is so boring. The big excitement was the 5 times a nurse came in to give me pills. I was on 2 different antibiotics, 1 twice a day and the other 3 times a day so they were all at different times. And there were the meals.....the food was actually not too bad but I wasn't overly hungry. I was also paranoid that if I didn't eat enough they would keep me in hospital longer. Such struggles.
On Saturday I was told that if my blood culture results came back negative I could go home if I wanted. If I preferred it, I could also stay until Monday. Hmmmm......I think I will pick the going home option. Eventually we heard my cultures were negative so my discharge orders were written and I was given prescriptions for my antibiotics.
After 3 unexpected days away it was so nice to be home again. I never did get all my Christmas decorating done but there were some lights and the tree was up. Good enough.
Ian was off the week before Christmas and then his mum, sister, and brother-in-law came to visit for Christmas Eve and Christmas Day. We had the full turkey dinner Christmas day with my parents also in attendance. It was a nice little holiday.
I was supposed to have chemo #4 on December 28th but due to my little hospital visit it has been pushed a week to January. Also, because of my low neutrophil count I am going to get Neupogen shots after each of my cycles. Neupogen stimulates the bone marrow to produce more neutrophils so the risk of infection is decreased. I have heard that bone pain is the most common side effect. Joy. That will go well with the joint pain.
Next up is a quick trip to Winnipeg for a wedding. I sure hope the mild winter weather continues. And I think my New Year's resolution will be to not get admitted to hospital after that trip.
Happy New Year, everyone!
Two days after my fantastic birthday party I had my second cycle of chemo. Now that I know to stay on my low dose steroid, the primary side effect was joint pain and it was easy to control with Tylenol.
On Monday of the second week of December I was in for abdominal and head CT scans to see if the first couple rounds of chemo were having any effect. A
Tuesday was chemo cycle #3. Things were going well and the following weekend I popped to Vancouver to deliver a few gifts and meet the latest baby born amongst my circle of friends......such a cutie.
I started getting a scratchy throat but didn't think much of it as I had gotten a scratchy throat for both of the first 2 rounds as well. I had to return to Victoria on Wednesday evening for an appointment with my oncologist Thursday morning.
On Thursday morning just before Ian left for work he told me that I felt rather warm. I didn't feel 100% but I didn't feel too bad. Just before I left for my appointment I took my temperature.......uh oh.....38.5 C. I can't remember what temperature I was supposed to start panicking at but I figured I would notified the nurse when I arrived at the Cancer Agency.
As I was checking in for my appointment I saw my onc and told her I had a fever. She immediately called a nurse over to put me in a room and check my vitals. My heart rate was 145 and my temp was 38.2 C. I was put in another room with a more comfy lounging chair and I waited for my onc.
When my onc came in she told me that I would be moved over to the clinic nearby and I would get my bloodwork done and I would be given some IV fluids. They would monitor my temp and I may get admitted. Ugh. We also went over my CT results. The lesion on my skull is showing signs of shrinking as is the spot on my lung..... I guess that means it isn't radiation scarring. And the met on my rib continues to show signs of healing. Maybe it will go away completely some day. All in all it appears that the chemo is doing its thing.
After my appointment I was moved to a bed in the clinic area. My temp was checked again and it was up to 39.2 C. Next was bloodwork including bloood cultures then I was sent to radiology for a chest x-ray to check for pneumonia. Once back in my bed an IV was put in and saline was pumped into me.
After a while a clinic doc came in and told me that I was going to be admitted and I would get some IV antibiotics. Hopefully I would get to go home in 2 days. Ugh again. Ian came from work to see me around then and I sent him home to check on the pets.
Eventually I was moved to the oncology ward at the Royal Jubilee. The Cancer Agency sits on the grounds of the Jub and there is a convenient tunnel connecting the facilities making movement of patients pretty easy. I had been very unenthusiastic about getting admitted but I ended up in a private room since I was on reverse isolation.......that means everyone has to mask and glove up to protect me instead of masking and gloving to protect themselves from what ever nastiness I have......and I even had free TV for a couple days. The previous patient had been planning to be in hospital longer and had payed in advance for the TV. A nice little Christmas present.
Once I was comfy in my room the IV antibiotics were run and then it was more saline. In the evening I was told that so far my blood cultures were negative so they were going to switch me to oral antibiotics. No surprise about the negative results so far as I felt like I had a cold not something bacterial.
Friday was pretty dull and involved a lot of switching between all the major news channels. Regular daytime TV is so boring. The big excitement was the 5 times a nurse came in to give me pills. I was on 2 different antibiotics, 1 twice a day and the other 3 times a day so they were all at different times. And there were the meals.....the food was actually not too bad but I wasn't overly hungry. I was also paranoid that if I didn't eat enough they would keep me in hospital longer. Such struggles.
On Saturday I was told that if my blood culture results came back negative I could go home if I wanted. If I preferred it, I could also stay until Monday. Hmmmm......I think I will pick the going home option. Eventually we heard my cultures were negative so my discharge orders were written and I was given prescriptions for my antibiotics.
After 3 unexpected days away it was so nice to be home again. I never did get all my Christmas decorating done but there were some lights and the tree was up. Good enough.
Ian was off the week before Christmas and then his mum, sister, and brother-in-law came to visit for Christmas Eve and Christmas Day. We had the full turkey dinner Christmas day with my parents also in attendance. It was a nice little holiday.
I was supposed to have chemo #4 on December 28th but due to my little hospital visit it has been pushed a week to January. Also, because of my low neutrophil count I am going to get Neupogen shots after each of my cycles. Neupogen stimulates the bone marrow to produce more neutrophils so the risk of infection is decreased. I have heard that bone pain is the most common side effect. Joy. That will go well with the joint pain.
Next up is a quick trip to Winnipeg for a wedding. I sure hope the mild winter weather continues. And I think my New Year's resolution will be to not get admitted to hospital after that trip.
Happy New Year, everyone!
Monday, 30 November 2015
Docetaxol and turning 40
Chemo day was Monday October 19th, also election day in Canada (I am happy to say my riding, Saanich-Gulf Islands, had the highest turn out of the entire country as we re-elected Elizabeth May of the Green Party). Ian and I had planned ahead by participating in early voting. We were lucky and only had to wait about 15 minutes to get our ballots.
Back to the 19th.....I had asked my oncologist the previous week about approximately how long my infusions would take so Ian would know when to pick me up. I've spent enough time on the chemo ward I'm just as happy being there by myself so I can spend more time chatting with the nurses and other patients instead of always bringing someone with me. My oncologist said it would take about half a day so I arranged for Ian to meet me at 3.
My arm was getting warmed in preparation for the IV insertion when my nurse asked me if I had my appointment for the next day. What??????????
Turns out that the first cycle of my new drug protocol is supposed to be done over 2 days but no one told me. Great, the first day is supposed to be the Pertuzumab and the second day is the Docetaxol and Herceptin. That means all my premedication has been messed up as I need 3 doses of dexamethasone and 1 dose of another antinauseant before the Docetaxol. Grrrrrrrrrrrr
My nurse was a little upset that no one, and I had talked to 3 people: my onc, a chemo nurse, and the chemo scheduler, prior to starting my premeds and none of them had told me treatment was over 2 days. My nurse then talked to my onc, who was upset that she had forgotten about the 2 day protocol, and pharmacy and got them to agree that I could have all 3 drugs the first day. Such a relief.
My IV was finally put in, only an hour late, and the Pertuzumab started running. It was a little odd being on the chemo unit on a Monday as that seems to be a popular day for new patients to start their first round of chemo. I heard several patients getting walked through their antinauseant drug regimens and all the questions that come up. It took me back to that day a little over 3 years ago when Ian and I made our first trip to the chemo unit and how nerve racking that is with all the unknowns of how chemo will feel and how successful it will be.
The Pertuzumab ran for an hour then I had to wait for an hour of observation to make sure I didn't have an allergic reaction. It was a dull 1 hour and then the Docetaxol was started followed by another short observation time. Lucky again, no reaction. Then it was Herceptin time. Since I have been on Herceptin for so long with no problems my nurse let the Herceptin run for my usual half hour rather than the 1 hour the new patients get.
I really am thankful that I have not reacted to any of my drugs so far. There was a patient across the way from me that had a very bad reaction to one of his drugs this time. Turns out the drug was almost finished running when he started to react. I could see him shaking and he was across from me and down a couple of patients. He definitely kept everyone one their toes for a while. Fortunately the nurses and doc were able to get everything under control and by the time I left he was talking and relaxed and the drugs were running again.
As I didn't know how I would feel after treatment, Ian met me on the chemo unit and drove me home. I actually didn't feel too bad after so in the future I should be okay on my own. So nice.
That night I was pretty jittery from the steroid but the Docetaxol started to kick in and I was relatively low energy on Tuesday. Wednesday the joint pain started but it was so mild I didn't need any Tylenol. Thursday morning I had my Pamidronate infusion and Thursday afternoon I had to go for a cardiac echo.
I need an echo as my new baseline for starting Pertuzumab. Like Herceptin Pertuzumab is a targeted therapy against Her-2 and because the heart also has Her-2 there is small possibility of heart damage. My baseline echo will be used to monitor any level of heart damage if I begin to feel any symptoms of damage.
On Friday things started to go downhill. I had terrible joint pain that was dramatically worse than any I had while I was on Paclitaxol before. I'm not sure if the pain was just due to the Docetaxol or it was the combination of Docetaxol and Pamidronate. Whatever the cause it sucked. Fortunately 1 extra strength Tylenol gave me almost 5 hours of relief. I didn't do much on the weekend other than wait for the pain to just go away. By Monday the pain had improved and I was dealing with low level nausea which made me not want to eat. And since I wasn't eating I was feeling nauseous. Such a lovely cycle.
This went on for a week and a half. I had zero energy and pretty much just sat on the couch watching time pass. Not the most exciting time. And then I started to get a headache........ohhhhhhhhh. A giant lightbulb lit up over my head........this nausea is not from the chemo it is from the lesion on my skull, I just needed the headache as the clue.
So, back on the low dose of the dexamethasone steroid I had been on to help control the lesion symptoms. Holy flip of a switch Batman, literally within a couple hours the nausea was going away. It was gone by the next day. Lesson learned. Stay on the low dose steroid.
Life went back to sort of normal. My energy was still lower than pre chemo but I at least felt human again. And I still have all the Bell's symptoms of bad balance, being deaf, buzzing in my ear,and dysfunctional taste buds but at least I don't feel sick all the time. Gotta take what you can get.
The next few days passed uneventfully, except for shaving my head. I wanted to bake some zucchini bread and my hair was started to come out in small clumps so to prevent any nasty surprises in my bread I took Ian's electric shaver to my head. I did an okay job but Ian had to tidy me up a bit.
And then it was time for my birthday!!!!! I made it to 40.
Ian was off and we had a pretty mellow day. We had lobster for dinner.....my favourite! And Rice Krispie squares for dessert, seemed like a creative combination. I didn't want to go too overboard to conserve my energy for the weekend, our trip to Vancouver, and my birthday party.
On Saturday morning Ian and I packed up the pets and with a stop at Saanich Peninsula Hospital so I could get my bloodwork done, we headed to the ferry. We stayed at the Granville Island Hotel. I have eaten in both the brewpub (yummy pink hibiscus beer in the summer) and the restaurant in the past but I had never been in the hotel part before. It was a great place to stay, pet friendly, close to the party location, and it is only a short bus ride over Granville Bridge to the Fluevog store. I had time after check-in to pick up some birthday shoes.......
Thanks, Laura, for the photo!
Birthday shoes purchased it was time to get ready to do a little partying. It wasn't too difficult, mostly it was deciding which tuque to wear so my bald head didn't freeze. The party was being held at the Wicklow Pub which used to be Ian's and my local pub while we lived in Vancouver. We had lots of good times there so it was fun to go back.
I had a fantastic night!!!! Thank you to everyone who came out to celebrate with me. You have all been such a great support for both Ian and I as we have muddled our way through the world of cancer. A special shoutout to Lee, Lois, and Julie that came from Winnipeg and Jen who came in from Yellowknife. And thank you to Tess, the SPH baker extraordinare, for supplying the cupcakes.......mmmmmmm.........cupcake sandwiches......
Turning 40 became my long-term goal after getting my diagnosis and I had always planned a big party to celebrate getting there. Now I am thinking about what my next goal, and excuse for the next big party, should be. I have a couple of ideas so I will keep you posted.
Sunday it was time to return home to Victoria as Monday morning was round 2 of chemo. This post is long enough so I will leave those gory details for another post.
Back to the 19th.....I had asked my oncologist the previous week about approximately how long my infusions would take so Ian would know when to pick me up. I've spent enough time on the chemo ward I'm just as happy being there by myself so I can spend more time chatting with the nurses and other patients instead of always bringing someone with me. My oncologist said it would take about half a day so I arranged for Ian to meet me at 3.
My arm was getting warmed in preparation for the IV insertion when my nurse asked me if I had my appointment for the next day. What??????????
Turns out that the first cycle of my new drug protocol is supposed to be done over 2 days but no one told me. Great, the first day is supposed to be the Pertuzumab and the second day is the Docetaxol and Herceptin. That means all my premedication has been messed up as I need 3 doses of dexamethasone and 1 dose of another antinauseant before the Docetaxol. Grrrrrrrrrrrr
My nurse was a little upset that no one, and I had talked to 3 people: my onc, a chemo nurse, and the chemo scheduler, prior to starting my premeds and none of them had told me treatment was over 2 days. My nurse then talked to my onc, who was upset that she had forgotten about the 2 day protocol, and pharmacy and got them to agree that I could have all 3 drugs the first day. Such a relief.
My IV was finally put in, only an hour late, and the Pertuzumab started running. It was a little odd being on the chemo unit on a Monday as that seems to be a popular day for new patients to start their first round of chemo. I heard several patients getting walked through their antinauseant drug regimens and all the questions that come up. It took me back to that day a little over 3 years ago when Ian and I made our first trip to the chemo unit and how nerve racking that is with all the unknowns of how chemo will feel and how successful it will be.
The Pertuzumab ran for an hour then I had to wait for an hour of observation to make sure I didn't have an allergic reaction. It was a dull 1 hour and then the Docetaxol was started followed by another short observation time. Lucky again, no reaction. Then it was Herceptin time. Since I have been on Herceptin for so long with no problems my nurse let the Herceptin run for my usual half hour rather than the 1 hour the new patients get.
I really am thankful that I have not reacted to any of my drugs so far. There was a patient across the way from me that had a very bad reaction to one of his drugs this time. Turns out the drug was almost finished running when he started to react. I could see him shaking and he was across from me and down a couple of patients. He definitely kept everyone one their toes for a while. Fortunately the nurses and doc were able to get everything under control and by the time I left he was talking and relaxed and the drugs were running again.
As I didn't know how I would feel after treatment, Ian met me on the chemo unit and drove me home. I actually didn't feel too bad after so in the future I should be okay on my own. So nice.
That night I was pretty jittery from the steroid but the Docetaxol started to kick in and I was relatively low energy on Tuesday. Wednesday the joint pain started but it was so mild I didn't need any Tylenol. Thursday morning I had my Pamidronate infusion and Thursday afternoon I had to go for a cardiac echo.
I need an echo as my new baseline for starting Pertuzumab. Like Herceptin Pertuzumab is a targeted therapy against Her-2 and because the heart also has Her-2 there is small possibility of heart damage. My baseline echo will be used to monitor any level of heart damage if I begin to feel any symptoms of damage.
On Friday things started to go downhill. I had terrible joint pain that was dramatically worse than any I had while I was on Paclitaxol before. I'm not sure if the pain was just due to the Docetaxol or it was the combination of Docetaxol and Pamidronate. Whatever the cause it sucked. Fortunately 1 extra strength Tylenol gave me almost 5 hours of relief. I didn't do much on the weekend other than wait for the pain to just go away. By Monday the pain had improved and I was dealing with low level nausea which made me not want to eat. And since I wasn't eating I was feeling nauseous. Such a lovely cycle.
This went on for a week and a half. I had zero energy and pretty much just sat on the couch watching time pass. Not the most exciting time. And then I started to get a headache........ohhhhhhhhh. A giant lightbulb lit up over my head........this nausea is not from the chemo it is from the lesion on my skull, I just needed the headache as the clue.
So, back on the low dose of the dexamethasone steroid I had been on to help control the lesion symptoms. Holy flip of a switch Batman, literally within a couple hours the nausea was going away. It was gone by the next day. Lesson learned. Stay on the low dose steroid.
Life went back to sort of normal. My energy was still lower than pre chemo but I at least felt human again. And I still have all the Bell's symptoms of bad balance, being deaf, buzzing in my ear,and dysfunctional taste buds but at least I don't feel sick all the time. Gotta take what you can get.
The next few days passed uneventfully, except for shaving my head. I wanted to bake some zucchini bread and my hair was started to come out in small clumps so to prevent any nasty surprises in my bread I took Ian's electric shaver to my head. I did an okay job but Ian had to tidy me up a bit.
And then it was time for my birthday!!!!! I made it to 40.
Ian was off and we had a pretty mellow day. We had lobster for dinner.....my favourite! And Rice Krispie squares for dessert, seemed like a creative combination. I didn't want to go too overboard to conserve my energy for the weekend, our trip to Vancouver, and my birthday party.
On Saturday morning Ian and I packed up the pets and with a stop at Saanich Peninsula Hospital so I could get my bloodwork done, we headed to the ferry. We stayed at the Granville Island Hotel. I have eaten in both the brewpub (yummy pink hibiscus beer in the summer) and the restaurant in the past but I had never been in the hotel part before. It was a great place to stay, pet friendly, close to the party location, and it is only a short bus ride over Granville Bridge to the Fluevog store. I had time after check-in to pick up some birthday shoes.......
Thanks, Laura, for the photo!
Birthday shoes purchased it was time to get ready to do a little partying. It wasn't too difficult, mostly it was deciding which tuque to wear so my bald head didn't freeze. The party was being held at the Wicklow Pub which used to be Ian's and my local pub while we lived in Vancouver. We had lots of good times there so it was fun to go back.
I had a fantastic night!!!! Thank you to everyone who came out to celebrate with me. You have all been such a great support for both Ian and I as we have muddled our way through the world of cancer. A special shoutout to Lee, Lois, and Julie that came from Winnipeg and Jen who came in from Yellowknife. And thank you to Tess, the SPH baker extraordinare, for supplying the cupcakes.......mmmmmmm.........cupcake sandwiches......
Turning 40 became my long-term goal after getting my diagnosis and I had always planned a big party to celebrate getting there. Now I am thinking about what my next goal, and excuse for the next big party, should be. I have a couple of ideas so I will keep you posted.
Sunday it was time to return home to Victoria as Monday morning was round 2 of chemo. This post is long enough so I will leave those gory details for another post.
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