I think I might stop with the post-transplant counts for blog post titles. I'm not sure it really matters at this point since my primary focus is the leukemia and not the transplant.
I've previously written about cancer diagnosis being a roller coaster (see here and here). But today the roller coaster took off while I was still in my appointment.
My labs are holding/low.
WBC: 0.7 (up a teeny bit)
ANC: 0.03
HGB: 8.1
PLT: 29K
Peripheral blasts: 40% (though Dr. Atallah said not to panic as my counts are so low that this might, literally, be two cells of five seen.)
As a side note, while I was waiting to see Dr. Atallah and the door to the exam room was cracked open, Dr. Hamadani peeked his head in to say "hi." It was really nice to see him--he totally grew on me as a provider the longer I saw him. He came in and almost immediately looked at my legs and said, "I see you have a bit of chronic graft vs. host disease here on your legs. What are they doing about it?" I said that I'd had punch biopsies at the dermatologist's but they said nothing came back other than a bit of eczema-type rash, which they prescribed a topical steroid cream for because they didn't think it was GVHD. He said, "I see. Biopsies are very good at finding positive results. <pause> That is classic GVHD rash. What they prescribed will take care of it." And then he left. I'd call that classic Dr. Hamadani--using exactly the number of words needed to convey everything without any extra. I seriously love that.
So as a reminder, I had gone off of all chemo since last Monday in anticipation of a spot opening up in the increased-dosage, Phase 1 trial known as CLAG-M + Lintuzimab. The FDA had given verbal approval to Froedtert and they expected written approval soon. Unfortunately, Dr. Atallah said that the absolute soonest that approval would come would be September 14. That's a long time w/o any treatment for a growing leukemia, and that's no guarantee that I'd even be accepted or that it would happen on the 14th (roller coaster dip). However, there is another clinical trial, called PraGO. This trial combines the already-approved antibody-drug conjugate Myelotarg, which also targets CD-33 expressing leukemic cells, with a histone deacetylase inhibitor called Pracinostat. Pracinostat (an oral med) essentially causes even those leukemic cells that don't express CD-33 highly to express it. The Myelotarg (infusion) then, presumably, seeks out all the leukemic cells and destroys them. This clinical trial is also in the increased-dosage, Phase 1 stage. Myelotarg is supposed to be very well tolerated, while Pracinostat, even at lower doses, causes fatigue and nausea. Nausea is one of my least favorite things, but this treatment could be done outpatient. OK, I can do it! Let's go! (roller coaster climb)
Dr. Atallah stepped out to get the paperwork for me to sign to enroll in the clinical trial. Travis (who was with me at the appointment to be my extra set of ears) and I waited. And we waited. And we waited. And then Dr. Atallah came back in and said, "I'm sorry--we have to change the plan." Apparently between the time that he found this clinical trial (this morning? yesterday? whenever) and when I was about to sign up for it, another patient filled the spot (roller coaster descent again).
While my mind was again wrapping itself around re-hospitalization for a not-clinical trial, he said that what he'd like to do is give me the Myelotarg by itself. It has only had 10-20% efficacy in trials up to this point, but it should keep the leukemia in check for a few more weeks and at that point it either works (maybe for once I'll be on the GOOD side of rare effects--cross fingers) or we may have opportunities for other clinical trials (roller coaster glides into the ending where I can jump out).
My emotions are mixed. I was hopeful for the CLAG-M + Lintuzimab, but not necessarily sold on it. I was not looking forward to another long hospital stay, especially now that Froedtert has again restricted all inpatient visitors. I was intrigued by the PraGO trial, although the thought of extreme nausea made me very, very nervous. I can barely eat now--if I vomit everything up, I'll waste away to nothing. And so the description of the Myelotarg itself is comforting.
I am focusing on the good things going into the Myelotarg treatment. I'm not a religious person, but I'm a superstitious/spiritual person. When I first posted last month about not knowing if I'd get into the CLAG-M trial, my friend Sarah (who is a Science geek like me) told me about another treatment that targeted CD-33. That treatment was Myelotarg. I had written it in my notes to ask Dr. Atallah about if he had said that we'd do CLAG-M alone. So I see that as a sign. I appreciate the ability to do this treatment as an outpatient. It will be three treatments (next Tuesday, Friday, Monday) which involve a two-hour infusion preceded by pre-meds (Tylenol, Benadryl, Methlyprednisolone) for an hour, and then an hour of observation after due to an increased chance of reaction to the Myelotarg. Three long days. It will (again) knock down my blood counts, so I will need frequent labs and probably blood and platelet transfusions. But I will be home at night and on the days in between and even if I'm too tired to do anything, I would rather do nothing in my home than on a hospital floor.
Better yet, it means that I should be home when our newest family member joins us.
Cancer changes people. And the strangest thing is that it changed me from a not-dog person to an I-think-I'd-like-a-dog person. All the hours home and years of my children wanting a furry pet must have stuck in the back of my brain. So after a failed attempt at adopting a Shihtzu, our family decided that we wanted to adopt a retired Greyhound. Last month we started the process through Greyhound Pets of America. They've been wonderful! They did a home visit and approved us to adopt when the next batch of greyhounds arrived. On August 22nd, thirteen retired racers arrived from a track in West Virginia. Because of my immunocompromised state, we were allowed to view them before it was open to others. Monday morning we visited and one dog chose us.
Kravitz (Ash chose his name) was a pretty successful racer: racing 172 times, winning 24 times and taking second 16 times (his racing name was LK's Big Baller, if you want to look up his record). He is 4 1/2 years old. He was neutered Tuesday and will spend about two weeks at a foster home starting next Tuesday. There he will learn how to live with people before he joins us. I am shocked at how excited I am for him to join us. And so happy to have something fun for us all to look forward to. I'll have more photos at some point for those who like that sort of thing. :)
Still don't enjoy roller coasters, though. Give me a nice, calm lazy river any day.
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