David has now completed 3 cycles of Vidaza. He had a bone marrow biopsy several weeks ago. At first we thought the results were good, that his cancer cells had been reduced sufficiently to proceed with transplant. After our local oncologist spoke to the transplant specialist at Mayo, we received word that Mayo wants another cycle of Vidaza, this time with Venetoclax added. Apparently chromosomal analysis of the bone marrow led to this change. Also the Mayo specialist set benchmarks for his blood counts to be met before he can receive the chemotherapy, with levels that he has not been at in months (possibly years). He has in fact been needing transfusions two or three times per week since December. I am completely confused by the plan. He has never had Venetoclax before and we are concerned about side effects.
I will keep trying to get clearer communication from the transplant team.
The good news is, they have identified a primary and a secondary donor for the stem cell transplant. They tell us to plan to proceed in 8 weeks.
In other news, extensive studies of the bone marrow showed zero CLL. but "only 20% cellularity." Not much going on in his battered bone marrow, and apparently what is there ain't good.
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dwolden
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I thought that stem cell transplant was something that patients are suggested undergoing once they took BTK and BCL-2 inhibitors earlier and those don't work anymore. So the fact that he never had V before surprised me.
Leo, I think David is still in remission from CLL, after FCR. He is now sadly dealing with MDS, probably because of his FCR treatment. CLL drugs do not work on MDS if I'm right.
Right Poodle, but current MDS treatment thinking may add ventoclax to Vidaza for patients who only have MDS and who have never had a history of CLL. See:
Targeted Agents and Combination Therapies May Open Doors in MDS Management
"Treatments such as ivosidenib (Tibsovo) are revolutionizing the standard of care for subsets of patients with myelodysplastic syndrome (MDS), with other options like venetoclax (Venclexta) and menin inhibitors, pending inclusion in the treatment paradigm as well"
Also, see:
"Azacitidine in combination with venetoclax: Venetoclax was granted regular FDA approval in October 2020 in combination with HMA therapy (IV or subcutaneous only) or low-dose cytarabine for patients with newly diagnosed AML ≥75 years or unable to tolerate intensive chemotherapy. Venetoclax is an oral, potent, selective inhibitor of B-cell lymphoma 2, which is an antiapoptotic protein highly expressed in AML stem cells that rely on this protein for survival.25 Given the effectiveness of venetoclax combinations in AML, venetoclax in combination with azacitidine was investigated in HR-MDS, first in the phase 1b M15-522 trial in relapsed/refractory (r/r) disease and MDS-531 trial in previously untreated patients, as well as currently in the phase 3 VERONA trial in treatment-naive disease."
Don’t know that much about the things that you are facing but definitely am thinking of you and hoping for a good outcome. Btw many patients do very well in venetoclax with few side effects so hope that is true for you.
I have a rare form of Multiple Myeloma, in the Leukemia family, so hope it is okay if I post. I am 68, female. I am finishing up four rounds of four drug chemotherapy to prepare to autologous stem cell. I had not given a thought to the outcome of the bone biopsy. I have had two blood transfusions during chemo. low hemoglobin. I do not remember my results of FISH study, but I am considered high risk. Seems they are trying to move very quickly to stem cell procedure. They are telling me I am a very good prospect for stem cell. I feel like a frail old lady, but they seem very optimistic. I know it will be rough, but is a self transplant, so hopefully I will not be dealing with rejection issues. I have dealt with chronic constipation, nausea, a blood infection, anemia, fatigue, and on this fourth round, neuropathy. I was on Darzalex but they stopped that this week. I have this week and next, then off everything for 3 weeks. I am on high dose Dexamethasone, Velcade and Revlimid. Velcade is the culprit with the neuropathy. I started having fall issues so doctor cut dose of Velcade in half. Velcade is a nasty drug. I wish you well with your stem cell. I read where the donor stem cell is a more intense process than the self one.
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cll w/ a twist - Stem cell
Hubby is in remission but still needs to take his A&V for an additional 8.5months.
