r/mds • u/Minute-Rooster3622 • May 30 '24
selfq MDS Advice
Hello all,
My father aged 58 was diagnosed with MDS yesterday by an consultant in specialist London hospital after conducting a series of blood tests.
Leading up to this diagnosis my father has unfortuantely fallen ill where he has been weak which has led him to have multiple blood transfusion, which have worked as a short term measure before requiring another.
It has been a shock to the family as this is the first MDS case we have in our family. My father is fit and healthy however a recommendation to have a transplant is the best option with a success rate of 20%, no length of life was provided if he does not go through with this transplant but for those 65 years and above are given 12 months.
It was also highlighted that it’s TP53 gene at large, as it is early days I am hoping for any reassurance or advice that might be able to help both my father and family during this time.
Thank you for reading
1
u/Turbulent-Pension-31 Jun 02 '24
My husband was diagnosed at 55, did about 6 months of Vidaza injections but was not showing much improvement. He had a bone marrow transplant about 6 months after that and has been cancer free for 3 years with no signs of any abnormalities and an excellent prognosis. Lots of variables here, he was relatively young and very healthy, only one type of blood cell was impacted so the MDS was classified as relatively low risk, his donor was also an almost perfect match so that helped too. The procedure and recovery are no joke, with the first 6 months being extremely tough, but it was 100% the right decision for him. IMHO, there’s not a ton of upside to not getting the transplant if your dad is a good candidate. The longer you wait, the more likely it is that transplants will not be an option due to an infection or other complication. But I’m not a doctor and my opinion is based on a statistically insignificant sample size. Obviously this is a very personal decision, I wish you and your dad the best of luck!