← Return to Living with MDS (Myelodyplastic Syndromes)

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@bevancarney1054

First time post here. We live on the Sunshine Coast an hour north of Brisbane in Australia. Retirement and old age is our biggest industry. I was diagnosed with MDS in early Dec24 and it took a while for me to get my head around the diagnosis. I had the hip biopsy which confirmed his diagnosis. We informed our 3 grown up children well after a terrific Christmas but I found myself immediately writing about my early years. It takes a while to digest the whole thing when there’s talk of chemo, transplants, blood counts, transfusions, medication etc. I decided to fly to Bangkok and talk to 2 cancer clinic hospitals over there but 65 is the cut off age for transplants and the other was an alternative style treatment for 8 weeks but they have never had an MDS patient before and very expensive AU$100k.
My 3 monthly checkup showed my red blood levels still dropping but I still feel great. I play golf 4 times a week and haven’t noticed any changes whatsoever. I really don’t know what’s in store for me but this wait and see what happens doesn’t feel right somehow. I have been referred to another specialist in Brisbane who does the actual stem cell replacement operations and hopefully his opinion will sink in. I’m 70 and reasonably fit and haven’t shared my diagnosis with many. I’m still not convinced that I am crook. I’m now at that stage where I want to know what is next or what am I supposed to experience. The only spiritual beliefs I have is the Golf Gods and Luck. That may shock some but we are all different. I’ve experienced an unbelievable life with a terrific wife and I’d rather this happen to me than any of my family. If anyone is in a similar position, I’d like to hear from you and what you’re being told or have been prescribed. If I can make 80 in reasonable condition then I’d be more than happy. Cheers

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Replies to "First time post here. We live on the Sunshine Coast an hour north of Brisbane in..."

I was diagnosed with MDS IB2 March 2024 age 76. I was told by my hematologist and two others at two different transplant centers that because I was in otherwise good health my age was not an issue for a stem cell transplant. After 3 rounds of chemotherapy my cell counts were normal and my blast count down to 2%. I informed my hematologists that I was opting out of the transplant choosing instead to pursue long term chemotherapy. They agreed. In the interim I had turned 77 in January of 2025 and they were still willing to go forward with the transplant if I wanted it.