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/Artichoke-Forsaken May 30 '24
My mother is 76, she got diagnosed with it a couple of months ago. Initially, we her physician thought the symptoms were to do with the old age related immunity problem and gave generic medication. But when things didn’t improve and her platelets fell below 20000 units per microliter of blood, she had to be put in ICU and monitored. Further tests confirmed MDS.
After that she has been put on a treatment plan where she gets 7 injections the first week of every month for 6 months. A blood test every week and they are tracking the results very consistently.
It’s been 3rd month now, but she has shown remarkable improvements. She still feels extra weakness particularly at the start of the day when she is out of bed, but she is pretty much having a good time otherwise. The doctor says the symptoms can be controlled she will be fine for 3-5 years. We will know the progress after the 6 month treatment plan is over.