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Has anyone been diagnosed with both AML and Multiple Myeloma?
I am a 79 year old who has been treated with venetoclax and decitabine for 2 years for my AML. I have been in remission throughout treatment. Neutropenia has been my only significant side effect. In Jan 2024 I was also diagnosed with Multiple Myeloma after various tests (e.g. PET/CT, bone biopsy). This month I received "palliative" radiation on 4 spots on my spine and hip revealed in the scans. My AML and MM doctors have conferred and are recommending a "wait and see" approach since my MM seems to be progressing slowing. They will monitor with additional blood work to check M spikes and with a bone marrow biopsy in March. Treating both diseases at once would apparently be very risky so at present I am just continuing my AML routine. If anyone has faced this situation, I would appreciate knowing something about your treatment plan and what is driving the decisions re which to treat and how.
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I have MDS and MGUS (which is the precursor to MM). I am going to be scheduled for a stem cell transplant abd Oncologist said that it would also get rid of the MGUS. I will be starting on decitabine in the next 2 weeks. Can you tell me what side effects you had? I know everyone is different, but just curious so I will know what to look out for. Thank You
Hi Marylou,
I have been taking decitabine together with venetoclax throughout my treatment so I am not sure exactly which side effects are caused by decitabine. I believe my most serious side effect (neutropenia and consequent immunosuppression) is attributable to venetoclax. At times I do have fatigue, constipation and shortness of breath with exertion but I think those things could be because of either drug and/or because of the AML itself. Good luck in the weeks ahead. I hope your treatment brings you relief from all you are struggling with.
@lindagi I am curious if the diagnosis is multiple myeloma, or one of the precurosors of it, MGUS or Smoldering Multiple Myeloma?
Ginger
Hi Ginger,
Unfortunately the various clinical tests eventually confirmed the criteria for multiple myeloma, not one of the precursors. A bone biopsy of one of my spinal lesions showed "positive for neoplasm. Plasma cells with kapa restriction, 5%; consistent with plasma cell dyscrasia."
Linda
I have both MM and Amy. Had a SCT just over 1 yr ago. I received partial response. Im on monthly maintenance Lenolidamide. My M proteins are slowly rising. Next treatment is probably Dara. I have been told the treatment is the same for both. Curious as to why you were told different.
Hi Trina,
I am not eligible for a SCT so that may be the reason for the difference in approaches. Nevertheless I will ask more specifically if the drugs you are on could treat both AML and MM for me.
Thanks so much for this information!
Linda
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1 ReactionThank you Linda. I currently feel very good which is why I was asking about side effects from Decitabine. I need to be functional. They want to lower my blast for a clinical trial, but I don't have any info on the trail and don't know the time commitment for the trail. I have not made a decision yet about going forward with the trail. I am being scheduled in a few months for an Allogeneic Stem Cell Transplant and will have conditioning chemo for that as well. I am.meeting with my Leukemia Doctor this coming Friday and I will have questions for him. Then I will decide about the trial.
Glad your medication is working for you. Stay hopeful.
No problem. Please update me after. Good luck!