Last week, we completed the first cycle of the "Clinical Trial". Mostly, this is the same chemo we tried during the first regimen, but with the addition of a new drug called Panopinostat. Apparently, this has shown good results, but is not yet clinically approved. The goal is still to get me to Stem Cell Transplant.
The results after the first cycle were reasonable - about like when the results from the first regimen, though this time we are starting from lower marker levels. What matters most here is not how fast we drive the numbers down, but rather that they stay down at the end long enough to make the Transplant happen. We won't know this until the end of the regimen.
Meanwhile, I continue to feel pretty good. It is interesting that everyone seems to think that the chemo will wipe me out, but the reality is that I usually feel better during the actual chemo and I can get more tired during the "rest periods". I think it is because the chemo includes a drug called Dexamethasone (Dex) which is a corticosteroid. I think this is the drug that induces "motor mouth syndrome" and cuts down the brain to mouth barrier. For me, it feels like a sort of caffeine high. I am not sure how Barbara feels about it.
My side effects during the first cycle were minimal. I did get some rather unpleasant lower leg and foot cramps which affected my sleeping for a few nights, but they did not last too long. The funniest side effect was hiccups which occurred during the first cycle. These lasted for hours after dinner on both chemo days of the first week. Fortunately they were fairly gentle hiccups and went away as soon as I rolled over to go to sleep.
Last Friday, we had friends visiting, so we went to Battleship Cove for the day. Unfortunately, it was "Free Friday" which meant that 75 or 80% of all the children in eastern Mass were there running around, screaming, and blocking passageways. Maybe this is like the confusion of combat.
I was totally wiped out on Saturday - whether it was from all the activity the day before or because of the chemo or because of it not being a "Dex Day". Who knows? I ended up taking a total of four naps during the day Saturday. In contrast, Sunday, I was quite lively and felt great all day.
I was all set to publish this last night, but ran into a slight problem. Lightening struck very close to our house and took the power out. My first thought was "Glad we have that generator". But apparently, it took the generator out too. Also, the phone and internet. And my large computer monitor. And also Barbara's computer. And probably a lot of other stuff too that we have not found yet. We just drove down to Fox Hill Village and are getting ready for another week of chemo, but this will give us projects to look forward to when we get back to New Hampshire.
The results after the first cycle were reasonable - about like when the results from the first regimen, though this time we are starting from lower marker levels. What matters most here is not how fast we drive the numbers down, but rather that they stay down at the end long enough to make the Transplant happen. We won't know this until the end of the regimen.
Meanwhile, I continue to feel pretty good. It is interesting that everyone seems to think that the chemo will wipe me out, but the reality is that I usually feel better during the actual chemo and I can get more tired during the "rest periods". I think it is because the chemo includes a drug called Dexamethasone (Dex) which is a corticosteroid. I think this is the drug that induces "motor mouth syndrome" and cuts down the brain to mouth barrier. For me, it feels like a sort of caffeine high. I am not sure how Barbara feels about it.
My side effects during the first cycle were minimal. I did get some rather unpleasant lower leg and foot cramps which affected my sleeping for a few nights, but they did not last too long. The funniest side effect was hiccups which occurred during the first cycle. These lasted for hours after dinner on both chemo days of the first week. Fortunately they were fairly gentle hiccups and went away as soon as I rolled over to go to sleep.
Last Friday, we had friends visiting, so we went to Battleship Cove for the day. Unfortunately, it was "Free Friday" which meant that 75 or 80% of all the children in eastern Mass were there running around, screaming, and blocking passageways. Maybe this is like the confusion of combat.
I was totally wiped out on Saturday - whether it was from all the activity the day before or because of the chemo or because of it not being a "Dex Day". Who knows? I ended up taking a total of four naps during the day Saturday. In contrast, Sunday, I was quite lively and felt great all day.
I was all set to publish this last night, but ran into a slight problem. Lightening struck very close to our house and took the power out. My first thought was "Glad we have that generator". But apparently, it took the generator out too. Also, the phone and internet. And my large computer monitor. And also Barbara's computer. And probably a lot of other stuff too that we have not found yet. We just drove down to Fox Hill Village and are getting ready for another week of chemo, but this will give us projects to look forward to when we get back to New Hampshire.
Glad you're feeling well through this.
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