Hi all. Obviously really aware that everyone’s experiences of these illnesses are different and specific medical advice is needed. But I wondered if I could draw on the experience of this group to learn a bit more about what lies ahead.
My dad has had an Myelodysplastic syndrome (MDS) diagnosis for a year or so. At first injections were started as the primary course of treatment but they didn’t seem to have any effect, so as of last autumn/winter he started transfusions. The frequency of these has already risen to monthly, which has happened faster than we expected or hoped, and he still has the same symptoms of fatigue, exhaustion, decreased appetite etc. He’s 73. It’s surprised me how fast his life has been changed by this illness (he now can’t walk far and is needing to rest and sleep a lot) and also how soon the frequency of the transfusions has risen. This makes me worry about the prognosis and timelines ahead of course (he’s not a case where BM transplants etc is an option).
What I’d especially really value everyone’s insights into is something I can’t easily find in my research: how his symptoms will change and decline over time and what the next few years will look like as his bone marrow deteriorates and his symptoms worsen. I assume for example that he’ll get increasingly tired, that he may need oxygen to breathe etc, but honestly this is my guesswork and I really don’t know! And that makes planning ahead harder.
Has anyone had experience of this trajectory of Myelodysplastic syndrome (MDS) and how it manifested? Thank you so much!