Long overdue for this update, but here it is.
On my last update I was in cycle 5 and the plan was to go with 6 cycles of chemo, but since I was having problems with skin toxicity we decided to drop the dose back down to 30 mg/m2. During that time there was also some collaboration between my local oncologist and the one I've been consulting with in Cleveland. The oncologist in Cleveland wanted to go with another year at the lower dose with treatment every other month, and my local oncologist wanted to stop at 6 cycles. I decided to just extend it to 8 cycles and be done.
The last three cycles weren't too bad with the adjusted dose, and I completed them without delay in early January. I had another clear scan in December which was awesome and made me feel better about stopping treatment. I have my first post treatment scan coming in a few weeks. Let's keep the clear scan streak going.
Looking back at how this last chemo regimen went makes me feel uneasy. My big concern is that I did not complete what I signed up for. I wanted to do 6 months of Doxil + Temsirolimus. I believed in that regimen. I read the research paper. My oncologist in Cleveland believed that it fit me well. Unfortunately those drugs just didn't agree with my body. I never had delays or dose reductions with prior chemos, but I had dose reductions, a drug elimination, and delays with this one. With this being my third relapse I needed things to just work.
Though things did not go according to plan, they have (knock on wood) worked so far. I have had three clear scans in a row with potentially a fourth soon. I completed eight cycles of Doxil and seven weeks of Temsirolimus which we can all agree is much better than nothing. I had my heart tested for damage, and and it was perfectly normal which is great news for someone who has had a lot of Anthracycline agents (Doxorubicin, and Doxil). And most importantly I got to complete treatment. Most people don't ever get to ring the bell on a relapse for Ewing's. I've done that twice now.
Since completing treatment I have been trying to get back to feeling normal. It seems like everytime I get to this point where I start exercising, getting more energy etc., I relapse. I'm still going to keep trying to get back in shape. It's been a long time since I've ran a full court pickup game of basketball. I think that's what my next big goal is going to be. I've been going to the park once or twice a week the last couple of weeks and walking the trails. I know it sounds like I'm old, but I have to start somewhere right? If my next scan comes back clear I'm also going to join a gym. I've lost a lot of muscle mass from the lack of physical activity for so long, and it would be great to improve on that. There are a few gyms close to my apartment and I found one that I want to join.
Last thing. Below is another one of those cheesy certificates for completing chemo. Hopefully I don't have to try to earn another one.
On my last update I was in cycle 5 and the plan was to go with 6 cycles of chemo, but since I was having problems with skin toxicity we decided to drop the dose back down to 30 mg/m2. During that time there was also some collaboration between my local oncologist and the one I've been consulting with in Cleveland. The oncologist in Cleveland wanted to go with another year at the lower dose with treatment every other month, and my local oncologist wanted to stop at 6 cycles. I decided to just extend it to 8 cycles and be done.
The last three cycles weren't too bad with the adjusted dose, and I completed them without delay in early January. I had another clear scan in December which was awesome and made me feel better about stopping treatment. I have my first post treatment scan coming in a few weeks. Let's keep the clear scan streak going.
Looking back at how this last chemo regimen went makes me feel uneasy. My big concern is that I did not complete what I signed up for. I wanted to do 6 months of Doxil + Temsirolimus. I believed in that regimen. I read the research paper. My oncologist in Cleveland believed that it fit me well. Unfortunately those drugs just didn't agree with my body. I never had delays or dose reductions with prior chemos, but I had dose reductions, a drug elimination, and delays with this one. With this being my third relapse I needed things to just work.
Though things did not go according to plan, they have (knock on wood) worked so far. I have had three clear scans in a row with potentially a fourth soon. I completed eight cycles of Doxil and seven weeks of Temsirolimus which we can all agree is much better than nothing. I had my heart tested for damage, and and it was perfectly normal which is great news for someone who has had a lot of Anthracycline agents (Doxorubicin, and Doxil). And most importantly I got to complete treatment. Most people don't ever get to ring the bell on a relapse for Ewing's. I've done that twice now.
Since completing treatment I have been trying to get back to feeling normal. It seems like everytime I get to this point where I start exercising, getting more energy etc., I relapse. I'm still going to keep trying to get back in shape. It's been a long time since I've ran a full court pickup game of basketball. I think that's what my next big goal is going to be. I've been going to the park once or twice a week the last couple of weeks and walking the trails. I know it sounds like I'm old, but I have to start somewhere right? If my next scan comes back clear I'm also going to join a gym. I've lost a lot of muscle mass from the lack of physical activity for so long, and it would be great to improve on that. There are a few gyms close to my apartment and I found one that I want to join.
Last thing. Below is another one of those cheesy certificates for completing chemo. Hopefully I don't have to try to earn another one.
Better late with this good, positive news dear Mike. WITH HOPE, FAITH, BELIEF AND ENCOURAGEMENT FOR CLEAR SCANS!
ReplyDeleteHi!
ReplyDeleteDid you try aronia melanocarpa?
Thanks!
Anthony
Hoping you are well and we hear from you soon
ReplyDeleteHoping you are well and we hear from you soon
ReplyDeleteI'm doing well Lisa. Six month scans were clear. My energy has improved a lot since the last update. More detailed post coming soon
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