18/1/25: I help to look after my father. He was diagnosed with Very High Risk Myelodysplastic syndrome (MDS) in October 2023. I take him to appointments, or other hospital visits which weren’t planned. I hope this diary will be helpful for others in the same situation. You are not alone.
My father was weak and thin at the time of diagnosis. Myelodysplastic syndrome (MDS) progresses slowly and I think he has had it about 10 years prior to diagnosis. His frailty meant that a bone marrow transplant was out of the question, as was strong chemo. He started on a mild chemo, Azacitidine, in January 2024. This was paused in a February 2024 due to sudden urinary retention which hospitalised him. He had constipation which doctors thought was the cause of the urinalysis retention. At the time they also found that his prostate was somewhat enlarged so they started him on Finasteride. After discharge they didn’t want to restart chemo. I asked for a second opinion from one of the top specialist Myelodysplastic syndrome (MDS) units. They recommended that chemo restart, but at half the dosage and for 5 days instead of 7. This seemed to be working fine but over the next few months my father became thinner, causing the doctors to pause chemo again last summer. The specialist we had seen for the second opinion continues to have my father on their list as a patient, and we went for a follow-up appointment in September 2024. I explained that chemo had been paused. The doctor commented on my father’s weight loss, and we explained that he has lost his appetite. He prescribed Megestrol to stimulate his appetite and this worked. They really have been a marvellous support through this.
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Hi @SallyMDS I have responded to your other post