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.
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| 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!!
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