My oncologist was on vacation for a few weeks so for my regular 9 week appointment I saw a stand-in. He had a unique bedside manner for a physician as he was not very good at eye contact. But he was very thorough.
I was phoned the day before my appointment and told that my appointment was being bumped a half-hour later. The reason for the delay was that the stand-in oncologist was presenting my case to the tumour group.
The initial decision by the group was that it was time for a change in my treatment. The reason behind the decision was my PET scan results from August.
My results were actually quite encouraging.....other than the lesion at the base of my skull. There were a few little spots on my right lung and in my right axilla that are likely scar tissue from the radiation I had in April. The spot on my 5th rib where I also had radiation was showing signs of healing. The original metastases I had at initial diagnosis are also not really showing on the PET. The most interesting thing was the specific mention of my liver, and to quote "liver looks normal". !!!!!!!
That means that the combination of Herceptin and anti-estrogen treatment has done a great job of getting the original ER+ metastases under control.
The next decision was that radiation is no longer an available option for the lesion at the base of my skull as I have received the maximum amount of radiation I can get to that area. That lead to the decision that it was now time to move back to chemotherapy.
The skull lesion has been growing even with regular Herceptin and there is concern that without a treatment change the lesion could get out of control and spread elsewhere.
I have actually been thinking about chemo for a few weeks so when the oncologist brought it up I was not surprised. It has been over a month and a half since I had the radiation and while the motion in my face is better there really has not been great improvement in the other symptoms. I am at the point where I am willing to change treatment in the hopes that the symptoms improve.
Once we had agreed on chemo the next step was deciding which chemo as there are currently two main options. The first option, and the one recommended by the group, is the more aggressive option. Hmmmm.....that will probably be my choice then as I have always gone for the most aggressive option first. This option is also the current first line of treatment for newly diagnosed stage IV patients. It was not available when I was first diagnosed and the group felt that just because I had bad timing (my words not theirs) I shouldn't miss out on the opportunity to receive this treatment. As I had already received some treatment it was necessary for my oncologist to request permission for me to now get this treatment, but.....the first person to suggest I get the treatment is actually the doctor that gives initial approval so I suspect the request would get approved pretty quickly.
The second option is less aggressive and more easily tolerated. But, if I went with the second option I would also be shutting the door on a few treatment options down the road. The second option is something called TDM-1 that was approved for use not long after I was originally diagnosed. It is a Herceptin molecule attached to a chemo molecule so when the Herceptin attaches to the Her-2 the chemo can more directly attack the cancer cells. By choosing this treatment though I would officially be going off Herceptin even though it is a part of the new drug and once I am off Herceptin there is no going back. That may in part be a funding issue but whatever the reason I don't want to lose the option to use a drug that is still working.
Option #1 that I am going with is a 3 drug combo of Docetaxol, Herceptin, and Pertuzumab. Pertuzumab is another monoclonal antibody that specifically targets Her-2.
Docetaxol is similar to Paclitaxol that I was on the first time I did chemo. The most common side effects are hair loss (boo......I just hope that when my hair grows back next time it doesn't decide my chemo hair is my real hair and so it grows back like my old hair. That would suck.), nerve pain in my hands and feet for a few days after treatment, possible nerve damage to my hands and feet, fluid retention (yay, to go with the fluid I'm already retaining), mouth sores, and low neutrophil count.
Once the decision to go with chemo had been made Ian asked me what are the rules were for while I was on chemo. Ummmmmm......lots of hand washing and always carry Kleenex. I couldn't remember anything else. I think I need to read my old posts and see what else I did.
I remember something about always using a straw and drink lots of soda water to help prevent mouth sores. Stay off public transit because of all the germs. Always carry Kleenex. I know. I obsess about Kleenex. I can't help it, losing one's nose hairs is really annoying.
After my oncologist returned from vacation I talked to her to get a few more details about my treatment plan. Her ideal plan for me is 8 rounds of chemo and then staying on the Herceptin and Pertuzumab. If I don't tolerate the treatment well she is okay with only doing 6 rounds but she really wants 8. I will do my best!
Friday I spent the day getting organised as chemo starts on Monday morning. I picked up and filled the prescriptions I will need, including more steroids. The dose is high enough I should be bouncing off the walls for a few days. I also have a couple anti nausea pills. One I take immediately pre chemo the other is only as needed. Hopefully it won't be needed.
I also stocked up on hand sanitiser and Kleenex. I still have my collection of hats and tuques so I am set there.
So now I have one day left before chemo starts. I am ready to get it going as I really hope the chemo does its thing and shrinks the skull lesion. I am ready for my hearing, balance, and taste buds to return to normal.
I will see you all on the other side after treatment #1 is done.
Saturday 17 October 2015
Saturday 10 October 2015
It's October? What happened to summer???
I have been stalling a little bit, okay, a lot, on this blog post. No particular reason, just not feeling overly creative. Summer turned out to be a bit of a blur. The weather was absolutely amazing but the Bell's palsy symptoms really put a damper on my activities.
I have regained a lot of the motion in my face......although I have to admit since I don't spend a lot of time staring at myself in the mirror the motion part is really the least important thing to me......aside from no longer needing a straw every time I have a drink.
I am still not blinking as much as I should so dry eye is an issue. I alternate weeks of taping my eye shut while I sleep so my face doesn't get too sensitive to the tape glue. And I spend a lot of time putting in eye drops. Fortunately Costco carries big boxes of eye drops so I bottles all over the house.
I am pretty deaf in my right ear. To make it worse I have a constant rushing sound in my ear and not silence. I have discovered I really appreciate silence. I hope that some day I experience it again.
To go with the deafness my balance is also wonky. I am the first to admit that I am not the most coordinated person but I'm pretty sure I look like I just stepped off a boat for the first time in a year the way I veer randomly down the sidewalks these days. And then there is the general risk of just falling down. My poor right leg has a truly beautiful assortment of bruises. I'm am glad it is pant weather now to hide them.
And then there is my tongue. Seriously, why is my tongue always affected???? The taste buds on the right side don't work and you know that burny feeling you get it you eat too many acidic foods at one time? I have that feeling ALL the time. Sooooooooooooooooooooo annoying.
I suppose it isn't totally horrendous. I find that every 4 or 5 days I have a better day and the symptoms are more tolerable. Over all though, I think these symptoms are worse than a lot of the side effects I had during chemo. Except maybe the nose hairs. Endless drippy nose still wins.
A week or so after the Bell's symptoms started I had a head MRI to see if it could explain what was going on. The last week of July, as soon as the MRI report was available I talked to my oncologist. The MRI may show signs that the soft tissue around the spot I had on my skull was starting to grow. The problem was that the MRI was being compared to the PET scan I had in January. Any differences between the scans may just be due to differences in technology so I got booked for another PET scan for the end of August.
In the meantime, in case the PET scan does end up showing growth around my skull which would mean more radiation, my oncologist put me on the wonderful steroid dexamethasone. Yay. The steroid is supposed to decrease inflammation of anything that is growing so hopefully improving my symptoms but also decreasing the side effects of the radiation should I need it.
My oncologist had already contacted my radiation oncologist that more radiation may be needed.
Even on the low dose I was put on it made me a little crazy. Insomnia, twitchiness, obsessive carbohydrate cravings, and water retention.....the moon face of steroids is so off putting. I freak myself out every time I look in a mirror because I don't look like me.
The day after my MRI results were available I also saw my neurologist......I was actually called for a same day appointment. He wanted to do a physical exam to see my symptoms before passing on his opinions to my oncologist. His opinion was that I should go for another PET scan to confirm the MRI and that most likely I would need radiation to the skull area. Nice that everyone was in the same page.
I spent most of August trying not to fall down and waiting for my PET scan. We did a little wine touring while Carly and Justin visited and Ian and I even popped down to Port Angeles to see his sister and brother-in-law. It was a fun day trip on the Coho and Port Angeles has some very good food and drink places. I unfortunately had to miss the Isaacs gathering in Winnipeg......I did my best to keep up with the gin and tonic consumption.
The penultimate (hahaha......I love that word. I only ever hear it in bicycle racing) weekend in August was my whirlwind trip to Vancouver for my PET scan. Thank you to Keets, David, and Satori for hosting me and to the few people I managed to visit with. I am hoping to having a longer trip over soon to have a better visit with you all!
I headed to the ferry immediately after my scan as I had an appointment with my radiation oncologist scheduled for the following morning and Herceptin for the following afternoon. This is part of why I don't work these days. It would be really difficult to fit all these medical appointments in around a job, particularly all the last minute ones I seem to get.
When I saw my rad onc she had the pictures from my PET scan but the report was not ready. Not a big surprise since it had only been about 20 hours since my scan had been completed. From the pictures she was able to see that there had been growth in the soft tissue next to where the skull lesion had been earlier. Yippee. More radiation. This did explain the Bell's palsy symptoms as the tissue growth was right at the base of the skull where the nerves enter the skull. The tissue is pressing on the nerves and causing the symptoms.
Radiation was scheduled for 5 treatments. Each dose would be less radiation than I had during the previous hit to my skull but the total would be more. Hopefully the premedicating with the steroid was worthwhile and I don't get sick like I had the previous time.
An hour and a half after the consult I had my planning scan.....see what I mean about short notice appointments? And an hour and half after that was Herceptin. Busy day. Radiation was scheduled to start the next day.....oh boy.
Mom drove me to my 5 days of radiation as I really wasn't sure how it would go. It wasn't super fantastic but it ended up not being as horrible as the first time. Some nausea and general hideousness feeling but it definitely could have been a lot worse.
Since then I have been waiting to see if my symptoms improve and trying to get off the steroids. Face mobility is very much better but the rest is pretty hit and miss. Some days are better some days are worse but overall there hasn't been much sign of consistent improvement. Last time I had radiation it was at the beginning of September. My headaches didn't go away until April even though by January the lesion was essentially healed. Perhaps I just need to be more patient, I just don't want to be. I am ready for some silence.
I have regained a lot of the motion in my face......although I have to admit since I don't spend a lot of time staring at myself in the mirror the motion part is really the least important thing to me......aside from no longer needing a straw every time I have a drink.
I am still not blinking as much as I should so dry eye is an issue. I alternate weeks of taping my eye shut while I sleep so my face doesn't get too sensitive to the tape glue. And I spend a lot of time putting in eye drops. Fortunately Costco carries big boxes of eye drops so I bottles all over the house.
I am pretty deaf in my right ear. To make it worse I have a constant rushing sound in my ear and not silence. I have discovered I really appreciate silence. I hope that some day I experience it again.
To go with the deafness my balance is also wonky. I am the first to admit that I am not the most coordinated person but I'm pretty sure I look like I just stepped off a boat for the first time in a year the way I veer randomly down the sidewalks these days. And then there is the general risk of just falling down. My poor right leg has a truly beautiful assortment of bruises. I'm am glad it is pant weather now to hide them.
And then there is my tongue. Seriously, why is my tongue always affected???? The taste buds on the right side don't work and you know that burny feeling you get it you eat too many acidic foods at one time? I have that feeling ALL the time. Sooooooooooooooooooooo annoying.
I suppose it isn't totally horrendous. I find that every 4 or 5 days I have a better day and the symptoms are more tolerable. Over all though, I think these symptoms are worse than a lot of the side effects I had during chemo. Except maybe the nose hairs. Endless drippy nose still wins.
A week or so after the Bell's symptoms started I had a head MRI to see if it could explain what was going on. The last week of July, as soon as the MRI report was available I talked to my oncologist. The MRI may show signs that the soft tissue around the spot I had on my skull was starting to grow. The problem was that the MRI was being compared to the PET scan I had in January. Any differences between the scans may just be due to differences in technology so I got booked for another PET scan for the end of August.
In the meantime, in case the PET scan does end up showing growth around my skull which would mean more radiation, my oncologist put me on the wonderful steroid dexamethasone. Yay. The steroid is supposed to decrease inflammation of anything that is growing so hopefully improving my symptoms but also decreasing the side effects of the radiation should I need it.
My oncologist had already contacted my radiation oncologist that more radiation may be needed.
Even on the low dose I was put on it made me a little crazy. Insomnia, twitchiness, obsessive carbohydrate cravings, and water retention.....the moon face of steroids is so off putting. I freak myself out every time I look in a mirror because I don't look like me.
The day after my MRI results were available I also saw my neurologist......I was actually called for a same day appointment. He wanted to do a physical exam to see my symptoms before passing on his opinions to my oncologist. His opinion was that I should go for another PET scan to confirm the MRI and that most likely I would need radiation to the skull area. Nice that everyone was in the same page.
I spent most of August trying not to fall down and waiting for my PET scan. We did a little wine touring while Carly and Justin visited and Ian and I even popped down to Port Angeles to see his sister and brother-in-law. It was a fun day trip on the Coho and Port Angeles has some very good food and drink places. I unfortunately had to miss the Isaacs gathering in Winnipeg......I did my best to keep up with the gin and tonic consumption.
The penultimate (hahaha......I love that word. I only ever hear it in bicycle racing) weekend in August was my whirlwind trip to Vancouver for my PET scan. Thank you to Keets, David, and Satori for hosting me and to the few people I managed to visit with. I am hoping to having a longer trip over soon to have a better visit with you all!
I headed to the ferry immediately after my scan as I had an appointment with my radiation oncologist scheduled for the following morning and Herceptin for the following afternoon. This is part of why I don't work these days. It would be really difficult to fit all these medical appointments in around a job, particularly all the last minute ones I seem to get.
When I saw my rad onc she had the pictures from my PET scan but the report was not ready. Not a big surprise since it had only been about 20 hours since my scan had been completed. From the pictures she was able to see that there had been growth in the soft tissue next to where the skull lesion had been earlier. Yippee. More radiation. This did explain the Bell's palsy symptoms as the tissue growth was right at the base of the skull where the nerves enter the skull. The tissue is pressing on the nerves and causing the symptoms.
Radiation was scheduled for 5 treatments. Each dose would be less radiation than I had during the previous hit to my skull but the total would be more. Hopefully the premedicating with the steroid was worthwhile and I don't get sick like I had the previous time.
An hour and a half after the consult I had my planning scan.....see what I mean about short notice appointments? And an hour and half after that was Herceptin. Busy day. Radiation was scheduled to start the next day.....oh boy.
Mom drove me to my 5 days of radiation as I really wasn't sure how it would go. It wasn't super fantastic but it ended up not being as horrible as the first time. Some nausea and general hideousness feeling but it definitely could have been a lot worse.
Since then I have been waiting to see if my symptoms improve and trying to get off the steroids. Face mobility is very much better but the rest is pretty hit and miss. Some days are better some days are worse but overall there hasn't been much sign of consistent improvement. Last time I had radiation it was at the beginning of September. My headaches didn't go away until April even though by January the lesion was essentially healed. Perhaps I just need to be more patient, I just don't want to be. I am ready for some silence.
Subscribe to:
Posts (Atom)