My 81 year old dad has recently was diagnosed with Myelodysplastic syndrome (MDS) his official prognosis is Fibrotic myelodysplasia with no excess of blasts. SRSF2 mutation and IDH 2 mutation positive. When I google it (not recommended I know) it says it is a poor prognosis. So won’t google it again
I decided to join here for others in the same position advice.
We spoke to a specialist at the blood hospital yesterday who said it was watch and wait at the moment. Which took me back a bit as I was expecting talk of some treatment. His red and white blood cells seem to have regular readings but his platelets are steadily falling and are now 34 x 10^9.
Basically just worried about the unknown or how quickly things could go downhill. I asked the blood specialist are there things I can do to help, like a particular diet for him etc and was told no. I left the hospital feeling a little helpless which on top of them not offering any treatment wasn’t a good mix of feelings.
I have an appointment at another hospital in January with a doctor who has been super helpful in the past so I at least have the hope that he will be able to be more open and clearer with help and advice.
I can imagine it’s been so much to process for all of you. Lots of new information and medical terms! I remember coming out of appointments with more questions that I went in with!
Active monitoring can be really scary. I have a different blood cancer, but I am also on active monitoring. It took quite a while to get my head round it. However, I try my hardest to think of it as a treatment in itself. It sounds like the hospital are keeping a close check on your dad which I hope reassures you.
I think we’ve all been down that Google route and then been so relieved to find this forum, which really has all the information you need, along with others who understand and can share experiences.
Make sure you write down your questions ready for the next appointment. I have also posted a couple of links that might be useful. Apologies it’s it’s information overload or if you’ve already read it.
This is one place you can say how it really is for you. And remember, the support line is there if you or your dad want to talk things through.
