I'm at risk for MDS (prior FCR), and my recent blood counts have dropped on year 12 of BTK inhibitor treatment. My counts have fluctuated, previously very low after a break off ibrutinib for mouth and throat ulcerations which improved by 2 weeks off treatment. But 7 months later my counts dropped significantly and I restarted BTK inhibition with acalabrutinib, now in year 5 with a good response: better counts, nodes markedly improved. Then covid and RSV and a bacterial pneumonia in 2023, all between June and December. After starting IV IgG infusions, no further infections and ANC about 1.0, plts 80-100, 000/ml and Hgb up to 11. Bone marrows showing ~25% CLL, RBC precursors increased with some macrocytic changes suggesting B12 or folate deficiency but these levels normal to high when measured in blood. These findings were consistent on 4 bone marrow biopsies over 4 years and without FISH or myelocytic molecular panel markers for MDS. No p53, del17 or other marker changes since diagnosis in 2008. umIGHV from first diagnosis. I am not infected now and feel well with Hgb of 10.5, plts 60ish, ANC 0.2.,the major changes being ANC and platelet drops. I am otherwise healthy except for mild renal insufficiency (Clearance of 35-40 ml/min and stable over 6 years. Trial of filgrastin underway to see how WBC/ANC respond in 1 week. I am likely headed for another bone marrow biopsy and more molecular studies. I most fear MDS, not BTK resistant CLL for which there are likely several options. And I've not yet been shown to have BTK resistance changes. If MDS, I have a sister with a match for BM transplant, though she has 2 daughters which increases my GVH risk. My question is, has anyone in our community had significant GVH disease following BM transplant for MDS? Have there been advances in curtailing GVH without losing the graft? Life with severe GVH on one or more immunosuppressives would be my worst nightmare. I know my work-up may start next week, and that I do not yet have a diagnosis of MDS, but I can't help but worry about it. Any thoughts and experience most welcome!!
chronic, debilitating GVHD was my biggest worry prior to my transplant as I know too well the desperate misery it can cause. However, a tiny bit of GVHD via donor T cells has a very important anti leukaemia/MDS effect which is beneficial.
What I would say is that the matching process is now very sophisticated and they are matching against more alleles than ever before. I was fortunate to have a 12/12 match and I haven't had any GVHD whatsoever. I had anti rejection drugs in the initial months post transplant and they made me feel so ill that they were tapered off a bit sooner than I expected. There are now quite a few drugs to control GVHD so it shouldn't be a major problem, most important thing is the matching process.
There is more to matching than just the HLA alleles - viruses are very important. So if you are CMV and/or EBV negative, as I was then you really need a donor who is the same or you risk a life threatening eruption of these viruses. If your sister had children and/or is older than her 30's then she may not be their first choice of donor as there is an increased risk of graft failure or GVHD. ABO incompatibility can be a complicating factor and definitely delayed my Hb rising. It's still below 10 now and I've started EPO injections because it's impacting on my quality of life.
Let us know what's happening with you when you know the plan, all the best
About 20 months ago all of my blood counts rapidly fell approximately 4-years after I concluded BR chemo treatment. JM954 and aussieneil pointed out the need to rule out MDS. My doctors at Dana Farber had the same concern about MDS and they ordered a battery of tests. I felt certain I had MDS. Fortunately, the cause of my disease was “only” my CLL returning. Stay positive. It is quite possible there is another reason behind the tends in your blood work.
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