Hi everyone. As you may know, my husband was diagnosed with CLL back in 2013, treated with six cycles of FCR, and achieved a "full response with incomplete recovery of the bone marrow." He had severe complications after treatment, but the CLL never recurred.
In November 2023 he began to experience fatigue and severe shortness of breath on exertion. His primary looked at blood results and referred him to his oncologist. A bone marrow biopsy led to a diagnosis of MDS. The oncologist told us it is most likely "subsequent to treatment" i.e. caused by the FCR. He referred us to the Mayo Clinic for stem cell transplant, as it is the only chance for a cure.
The transplant specialist at Mayo agreed with our local oncologist. They put together a plan for David to receive several cycles of a drug called vidaza. After three cycles, another bone marrow biopsy did not show the results the Mayo doctor had hoped for, so more Vidaza was ordered with the addition of venetoclax. David has now received six cycles of vidaza and two of venetoclax. He needed transfusions two or three times a week up until five weeks ago, when his numbers began to improve. All his counts are still low, but not needing transfusions has been a big quality of life difference.
After several weeks of spotty communication with Mayo, we just received the schedule to start the stem cell transplant process! A good donor has been identified and if the donor is available, we will be moving to Rochester for four months to get a new start on life. Dear community, we have found so much support here over the years. Please continue to hold us in your hearts as we move forward.
With love and hope,
Dorothy
Written by
dwolden
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Fingers crossed for the donor being available. Having recently had a transplant myself I can tell you that it's not an easy recovery but I never felt unsafe during the process or in hospital.
I hope your husband has a successful outcome and a smooth recovery.
I hope your husband has every success you seek and no complications from this procedure. Your emotional support during the initial 4 months will keep his spirits up for this intense treatment journey you're about to share. May you both look forward to good news on his health goals and test results
My best advice pre, during and after transplant is take it day by day...and think of it as another day towards health being returned. Also on admittance for the SCT make sure your hubby takes in snacks, books anything to keep him occupied. My son found his amazon firestick good company as he could watch netflix.
Your hubby and you will be in my prayers- my hubby is on venetoclax too and I call them his Angel Warriors--you are also your hubby's earth bound angel and I truly believe (and seen) miracles happen everyday
Wishing him comfort and success in this phase of his journey. As a CLLer who received FCR back in 2010, the possibility of MDS is a main concern for me. Let’s all hope that the advances in transplant and supportive care will give your husband (and others) renewed bone marrow function to move forward.
We are here! I hope you reach out as often as you need ❤️ and can trust that you are not alone in this. God bless and strengthen you both in body and spirit 🙏
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Allogenic HSCT with frozen stem cells?
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