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Profile picture for dwolden @dwolden

My husband was diagnosed with CLL in 2013 and treated with six cycles of FCR, an intense chemotherapy regimen. We had ten years of remission although his blood counts never recovered vigorously. We were told it was “incomplete recovery of the bone marrow.”
In 2023 at age 73 he began to experience severe shortness of breath and fatigue on exertion. We were shocked by a diagnosis of high risk MDS. His doctors feel it was caused by his FCR treatment. We were referred for allogenic stem cell transplant (anonymous donor, 9 of 10 match) which he was fortunate enough to receive in August 2024. It has been a very difficult process but here we are 15 months after transplant with recent bone marrow biopsy showing FULL REMISSION.
We are truly grateful for the excellent care and brilliance of his transplant team, led by his transplant specialist Aasiya Matin at the Mayo Clinic Rochester.
It can be done. Wishing your mother the best.

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Replies to "My husband was diagnosed with CLL in 2013 and treated with six cycles of FCR, an..."

@dwolden
Thanks for your reply. Your profile and username rung a bell, and I've realised it's because I've read some of your posts on the CLL support group (I'm not very active there, but check it frequently and post ocasionally when we need advice re. my mum's CLL). I'm glad to read that your husband is doing well. It sounds like his situation mirrors my mum's in many respects, only I don't think they believe my mum's MDS to be treatment-related given she never had the old chemo regimens for her CLL.

Is there any advice you or your husband would give one year out from the transplant? I know much of the advice is probably universal whe it comes to transplants, but knowing how similar your husband's situation is to my mum's, it might make the advice more meaningful/relevant!

My mum has all of her pre-transplant tests tomorrow. We're not quite sure what to expect from those. I think she is nervous, especially about the one that measures her lung capacity, as she has asthma and has always had pretty dismal results from those peak flow tests they use to monitor asthma.