New here today, and looking for folks dealing with MDS.
Been on different prostate cancer sites with interesting info, but can't find much on myelodysplastic syndromes (MDS) anywhere. Know there is only 10-14K cases a year. Doesn't seem like there is much posting at the MDS Foundation site. The prostate cancer folks don't seem to recognize MDS as a blood cancer. Sure mine was caused by my radiation treatments for my prostate cancer. No one every seems to consider that it may happen. Every type of cancer information seems to stovepipe to that particular one and doesn't consider that you have have several cancers at one time. Steadily going downhill, but want to fight it the best I can.
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I also have MDS-RS which I am sure was caused by my prostate cancer radiation. I have been dealing with it for 2 1/2 years. I take every opportunity to tell everyone I can. I am also sure that MDS goes undiagnosed often. I have always watched my blood numbers and was taking supplements to help. Finally someone listened to me and I got a bone marrow biopsy. My numbers get a little worse, but still hanging on. Dizziness and fatigue are the worst of my side effects.
, that is a burden! Have they been able to treat it so that it is not so troublesome? - Warmly, Donna (Team Member)
Hi
, just checking in to see how you are today, and if you were able to make any connections. - Warmly, Donna (Team Member) , I'm sending love, light and energy that you can draw upon. I did some searching and I found this, which I hope will be helpful: https://pmc.ncbi.nlm.nih.gov/articles/PMC5785924/ - is there any specific information you are trying to find? - Warmly, Donna (Team Member) Thank you for the information and kind thoughts. Wish my hemotologist had given it to me when I was first diagnosed.
