9/15 Last Day of Chemo
As of one hour ago, all the chemo I will need to prep for the CAR cells is done. Now I’m waiting out a bag of red blood cells. The train is moving along, but I wish it could move faster because with all this waiting from July, the leukemia inside of me has been multiplying. We tried our best to “keep a lid on it.” But now it rather high like 80% of my marrow, this means it’s squeezing out space for my body to make my other blood cells. So my counts have been dropping every day due to my increasing cancer load--making me feel more tired and be more susceptible to infection--and it would be nice to stop waiting and take something that will get to the root of the problem of too much ALL in my marrow. This past chemo does a little bit against the cancerous b-cells, but it also does a little bit to all my cell lines. So it’s a slight benefit the chemo, but I’m ready for the ALL-specific special forces to get in there. I actually had a little bit of good news today when I found out my platelet count went up 3 points. It had been dropping by 5 a day for previous 3 days: 30-25-20. I was expecting 15. But pleasantly it was 23. That means I’ll probably be stable during these two rest days I have tomorrow and Monday, and won’t have to come in. Plus with the platelets, I just don’t think transfusions are a good use of time and resources. The last ten bags I have had (this is from my memory) haven't jumped me more than 3k. Most people get a 10-20k jump with a bag. There is a chance that those pesky antibodies that were eating up platelets last winter have since died, and I now might respond to a bag. Who knows. Well enough about pesky platelets. Tuesday is a big day.
The unknown of this treatment still gnaws at me a little. What does cytokine release syndrome feel like? My body is also going to have to process a bunch of dead leukemia cells. How will that go down? I’m expecting general malaise and feeling-off, but it could be way more severe and present as severe flu-like symptoms (high fever, vomiting, feeling awful….yuck). Then if you throw in some neurotoxicity issues like confusion and it’s sounding rather terrible. Then to add to it, there’s a chance (~20 %) I get no symptoms, and the treatment doesn’t work (also would be really sucky). So I’m in this weird limbo, were I want to get a little sick (cause then it’s working), but not too sick (cause that will feel bad, and could snowball into a life-threatening situation). On the bright side, the whole treatment is pretty quick--another things that is hard to wrap my mind around. Previous to this, all treatment plans have been a multi-month affair to achieve a remission. This treatment is 21 days and at which we’ll know if it worked, and then as far as I know it’s back to “normal” life pretty quick. Three more days and the real Journey begins!
The unknown of this treatment still gnaws at me a little. What does cytokine release syndrome feel like? My body is also going to have to process a bunch of dead leukemia cells. How will that go down? I’m expecting general malaise and feeling-off, but it could be way more severe and present as severe flu-like symptoms (high fever, vomiting, feeling awful….yuck). Then if you throw in some neurotoxicity issues like confusion and it’s sounding rather terrible. Then to add to it, there’s a chance (~20 %) I get no symptoms, and the treatment doesn’t work (also would be really sucky). So I’m in this weird limbo, were I want to get a little sick (cause then it’s working), but not too sick (cause that will feel bad, and could snowball into a life-threatening situation). On the bright side, the whole treatment is pretty quick--another things that is hard to wrap my mind around. Previous to this, all treatment plans have been a multi-month affair to achieve a remission. This treatment is 21 days and at which we’ll know if it worked, and then as far as I know it’s back to “normal” life pretty quick. Three more days and the real Journey begins!
Thanks for the update Derek! I think about you guys all the time and wish we could give you a hug before the big day. I'll be rooting for the kind-of-sick-but-not-so-sick scenario, and hope you'll be back to eating Chuki's and Chickie's in no time. Sending a bunch of love from Virginia.
ReplyDeleteGlad to hear the update Derek. Good luck with the visits this week! Hoping for good news and the right amount of sick. Hugs to you, Bree, and Alpen!
ReplyDeleteCaro Lily and I are up at Sea Ranch toasting our coffee mugs to you and your super CAR T Cells. Big hugs to you and the fam.
ReplyDeletesending major good juju your way for tomorrow!
ReplyDeleteThinking about you today and sending a ton of positive vibes your way!
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ReplyDeleteAlso sending tons of love and positivity! Hoping you hit the sweet spot of not feeling too awful while those CAR T cells work their magic! Love, Elizabeth, Ben, and Sadie
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