Who else has Myelodysplastic Syndromes (MDS) in addition to their PCa?

[SpencerBoy11]

Dx a month ago as having trilineage MDS with Ring Sideroblasts(MDS-RS), somewhere between low and intermediate. Described as bone marrow cancers and a bone marrow biopsy is required for dx. It morphs into Acute Myloid Leukemia in 30-40% of the cases.

Know that my shit is weak and am searching for info just like I did when I joined here after my PCa dx. It is a very rare thing with only 10K to 15K cases a year in the USA. Lucky me! It appears that it is under dxed since many of the symptoms are the same for lots of diseases/SEs like ADT meds. Also folks died with it as well as from it. Only cure is a bone marrow transplant which is not available to folks over 60 and are fraught with bad outcomes.

If anyone else is in the same boat, please let me know. The MDS Foundation info says that chemo or radiation may be the thing that sets it off along with being over 55 or 60. Thanks for any responses.

[bravo35]

Hi, my name is Nicole and I’m educating patients with MDS about a new potential treatment currently being studied. Here is the link to the study if you’re interested in learning more or want to check your eligibility: app.patientwing.com/campaig.... Please reach out with any questions or concerns.

[Lynsi13]

Hi Spencer, I know this post is old, but I just found out that my dad that has stage four prostate cancer and has beat brain cancer has myelodysplastic syndrome. I'm wondering how you are doing? How has it been dealing with both diseases? My dad also has heart disease. I hope you're doing well!

[SpencerBoy11 in reply to Lynsi13]

Regarding the PCa, 6 month Lupron shot is still holding it at bay after the inital course of radiation. My MDS-RS still at active surveillance, but the numbers are still getting worse. I am 86 so can't get a transplant and they only work 40% of the time. I get it checked out every 3 months. After dumping 5 MOs, now at the University of Arizona Cancer Center in Tucson.

The combination of SEs sometimes takes a toll. Fatigue is the worst and the brain fog plus old age is a close second. Had to have a talk with myself about the fatigue, so I look at it as challenge. Having a dog to walk is a good thing. Got a white board on the refrigerator door to leave notes for myself. Unfortunately, my wife died a couple of years ago. But I am in a very busy RV Co-op, so have a lot of friends and activities . .