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Living with MDS (Myelodyplastic Syndromes)
Blood Cancers & Disorders | Last Active: 1 day ago | Replies (122)Comment receiving replies
My husband, 73, was diagnosed with High Risk MDS 10/23, 8 months into retirement. He has had many BMBs, infusions of platelets and RBCs. Labs twice weekly. He has had 10 rounds of azacitidine shots. He has progressively gotten weaker. So weak he can hardly walk to mailbox. His counts are extremely low; so low sometimes his chemo is canceled. I feel he will roll over to AML soon. He is scared of SCT, but he’s been athletic all his life. It seems his only chance to live is SCT, and I am just waiting for him to decide. His doctor encouraged it when diagnosed, leavening the decision to him. His metabolic table is perfect. I grieve to see him so weak and unhappy.
Replies to "My husband, 73, was diagnosed with High Risk MDS 10/23, 8 months into retirement. He has..."
My husband was 69 at the time of his diagnosis for MDS and after his first round of chemo one doctor told him he wouldn’t be a candidate for the SCT but like your husband he has always worked out. Our hosp had just started a program where they have the patient do Physical therapy to regain their strength. He was one of the first ones and he did get strong enough for the transplant and is 2 yrs out. So even if he is tired and can ask the doctors for a physical therapy referral. In the beginning he was using a walker and hasn’t used a walker since transplant. One day at a time.
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Hi @girlmidget. My heart goes out to both you and your husband with this emotional MDS journey he’s going through. As his caregiver you’re no doubt feeling very overwhelmed and helpless. I watched my husband age before my eyes when I was going through my AML/transplant odyssey. This illness takes a toll on the patient and the loved ones.
The decision to have a SCT is very personal. The process itself can be challenging with chemo, medications and the lengthy recovery. There are also factors transplant doctors take into consideration before they clear a patient to go ahead. Your husband’s health has changed over the past year and a half since his doctor recommended a transplant at the time of diagnosis.
You and your husband might want to talk to his doctor to see if he is still a potential candidate for the procedure. If not, then that takes the stress off your husband having to make that decision. If he is a candidate, then the discussion might be valuable to give your husband more information where he may not be as fearful. What do you think, would that be helpful?