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
Fludarabine: rare side effect of destroying ability for red blood cell production in myself. But also unwell with fevers.
Are there possibilities other than stem cell transplant in Canada for CLL with 11Q deletion?
Stem cell
