I'll start with the bright spot: my CMV copies fell down to undetectable this week! So I'm off the stronger antiviral and back on the "normal" antiviral (acyclovir). I might be imagining it, but I swear I feel less dizzy already. And it was dropping my blood counts, so hopefully being off it will help there, too.
Other bright spots are that the pills I need to take daily have dropped and will drop even more by the end of the week. (Tacro already; magnesium later)
But unfortunately the cytogenetics from my bone marrow biopsy did not come back "good."
Remember there are three levels of biopsy examination.
1. Gross (microscope slide) examination: mine looked clear
2. Flow cytometry (labeling cells with surface markers and examining them for makeup): mine had 0.67% cells "aberrant." That's non-specific, but not normal.
3. Cytogenetics, or examining the karyotype of a sample of cells. Of the sample of 20 bone marrow cells, eight of mine had genetic mutations. Some of these mutations had been present earlier (before I went into remission and before my transplant), and some were brand new mutations.
Here's where I'm not sure just how bad it all is. (Is this Bad with a capital B? bad with a lower case b? BAD in all caps?)
Because my aberrant cells are under 5%, I'm technically not out of remission, but I have MRD (minimal residual disease). But obviously we don't want any abnormal cells. And the fact that I had a very harsh, myeloablative (ie: kill everything in the marrow) chemo regimen before my transplant and I already (still?) have leukemic cells is not good.
I'd been told that a little graft vs. host disease (GVHD) would be likely, and actually a good thing because if my donor's marrow is attacking my body in some way, it's likely also seeking out any hiding leukemic cells and destroying them. I haven't had any GVHD symptoms, so the first thing my doctor did was wean me off the tacrolimus (and if I'm not taking tacro, I don't need the mag supplementation--that's 19 fewer pills a day). The second thing he did is get me into chemo. I was going to start chemo this week anyway, but it was to be given as a maintenance dose, to prevent recurrence. Now it's a dose to attempt to bring me back to complete remission with no MRD. The third thing he is planning to try is something called a donor lymphocyte infusion (DLI). Basically, you take lymphocytes (T-cells) from the donor and give them to the patient and hope they seek out the leukemic cells and attack them.
It all took me so much by surprise on Monday that I wasn't able to ask a lot of questions. I've been doing reading as much as I can, and talking to others with AML and/or who have had transplants to see who has had similar experiences. There are definitely people who have relapsed after transplant (and even had second transplants) and they are alive years later. But I continue to have a lot of characteristics that make my leukemia have a "poor prognosis." That includes it being caused by prior cancer treatment, the presence of more than 3 mutations, some of the high risk mutations, not having obtained full remission (I was MRD) before transplant, and now the persistence (or re-emergence) of MRD after transplant.
So it's pretty scary. I'm trying not to be panicky until I can talk to my team and see what they say specifically. And I have to focus on the fact that even the grimmest statistics have exceptions. I do have some things going for me: I'm young (under age 60), I'm in good physical shape overall, we have no evidence that it has spread out of my marrow/blood, and I follow my medical team's guidelines, taking all meds correctly, etc.
I'll update when I know more, but for now, feel free to send vibes that this round of chemo works on the mutations and that my donor is willing to again donate (this time lymphocytes) to me. Oh, and I guess you can throw in a bit to bump up my blood counts again since being on chemo will knock them down again (and they haven't had a chance to recover from the valganciclovir). I'd prefer to not need more transfusions.
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| More chemo! Only 5 days each month for this one. |
I am so glad that you ask for what you need, it is a blessing to be able to have specific intentions to send your way. Here goes, I will send vibes to your donor to give you some WBCs and send healing intentions that your chemo gets rid of those nasty mutations, and another that your counts stay where you need them to be to avoid transfusions and feel strong💪.
ReplyDeleteI'm glad you were able to hold up all of those bright spots first, you always find a way to count your blessings it seems. I hear the wisdom in your words, realistic and hopeful, arming yourself with knowledge and collaboration with others. When I face difficult challenges in my own life, I try to find strength by focusing on what in this situation is steady, strong and unchangeable-- the YOU that is Lori and the love within you as well as the love of family and friends surrounding you. Here's to all that is invincible in you!