CAR-T therapy is not easy. Even the easy parts are not that easy. Most good things in life are not that easy. At least for me. They take work.
I am continuing to mend but still find walking a real challenge. Knees are inflamed and muscles are weak and tight and sore. As L. Cohen said: “I ache in the places I used to play.” Today I walked the two blocks up and down the hill to the Seattle Cancer Care Alliance for the first time since I got home from the hospital a week ago. I was at my limit but I did it. I will do again tomorrow.
And I still have this weird thermal dysregulation that nobody warned me about. Then again, no-one warned me about the severe arthritic flare and its slow recovery, but that was because no-one had seen it before. This temperature issue was appreciated if not fully understood as part of the cytokine release package. IL-6 and IL-1 are two cytokines that effect the hypothalamus and regulate body temperature. My IL-6 shot up to 1286. It should be in single digits.
These wild flings of inflammatory chemicals have their impact. My temp reads 97, I feel cold and yet I soak through 1 to 5 T-shirts per night with drenching sweats. Makes sleeping tough. I am told it could take months for this temperature thing to fully calm down.
Appetite and gut are all back to normal off those nasty opioids. I have started to gain some weight and some muscle tone with my exercises from PT and OT. And doing some light work at the gym.
My anemia has climbed from a HBG of around 7 to over 10 in just the one week since being home. Credit Patty’s Cajun Gingerbread. And a healthy bone marrow, cleared out of CLL that had occupied most of it, now with plenty of space on the factory floor to made red blood cells. But I still get tired and winded with walking, but I will push through.
We have been in Seattle since the end of February and we are ready to get back home to see family and friends. It wears on us being in a hotel room, albeit a nice one. Even miss our pesky cat.
Tomorrow is a propitious day. I get my bone marrow biopsy and CT scan with the promise that my nodes and marrow can join my peripheral blood in the joys of being CLL free. Also get a ton of blood tests. And more the next day.
I will share the results as soon as I know them. But as I have explained before, I am very upbeat about my response.
When I get the deep and durable remission that I am anticipating, it will have all been worth it.
In chronic lymphocytic leukemia we all have different courses. Some never need treatment, some if smart and lucky with their choice of first therapy can have remarkably long and symptom free remissions.
Then there are those of us, who have relapsed after good or not so good responses to one or many therapies.
For that group, where I belong, I see we can artificially divide how we chose to manage our CLL into two patterns.
The first is:
Kick the can down the road as far as you can, and if you relapse, then try whatever is the next best thing at that future time and give that can another hard kick. This is a smart strategy in CLL where the therapeutic landscape is improving so quickly, but the risk is that the relapses may come too soon and new options may be limited.
The second is:
High risk, high gain. Looking for a card that is so high and wild, you would never have to deal another (with apologies to Leonard Cohen) Reaching for the flame thrower. Unleashing the new or genetically modified immune system. Going for a cellular therapy such as CAR-T or stem cell transplant in the hopes of “one and done”. Surviving the treatment. Recovering from the dark journey. Seeing the CLL fading in the rearview mirror.
You know what I chose.
We are all in this together.