High Risk Myelodysplastic Syndrome: What to Expect?

Hi Ray, So sorry to hear that your partner was diagnosed with high risk myelodysplastic syndrome. Hoping you find some answers soon to help you with the treatment decision. While you wait for members to respond, you might want to look through the discussions and member comments I found with this search for "myelodysplastic syndrome treatment" - https://connect.mayoclinic.org/search/?search=myelodysplastic+syndrome+treatments.

In one of the newsfeed posts in the search it had this article that might be helpful:
-- Myelodysplastic Syndromes Treatment: Past, present and goals for the future
https://connect.mayoclinic.org/blog/hematology/newsfeed-post/myelodysplastic-syndromes-treatment-past-present-and-goals-for-the-future/

My mother was diagnosed with MDS about 10 months ago… she is a healthy 88 years old. I’m not sure what her risk assessment was but she chose no treatment… has had zero issues just some mild fatigue… but nothing she couldn’t handle… still uses push mower to trim around her flowers…

None of the treatment routine of Vidaza and bloodwork and doc visits appealed to her… we all believe she has made the right choice for her…

We also all honestly feel that the treatment, had she chosen that path, would have diminished her lifetime in a way that would have been unsettling.

At 83 do they really want to go thru chemo? Much thought required if you wish to go down that road.

@ray666 That's a tough decision to make. High risk MDS has more severe treatment options with a shorter survivability. I hope the Dr discussed the prognosis. How much time does the Dr say your partner has with each treatment option? How long does she have before AML is diagnosed. Chemo will definitely affect her Quality of life. Transfusions help people feel better but will probably be frequent for high risk MDS. I think Decitabine is available for High Risk Patients. It is available in pill form. You could ask the Dr if any oral treatments are available and how much time it will buy your partner.

Good morning, John. Thanks a millionfold for these links! I'm passing them on to my partner. Moreso, I'm encouraging her to get involved with this forum. As you might guess, I'm a great believer in Connect. I'm a great believer in community, especially a community made up of good people fighting a common ailment. I'll be forever grateful to have become involved with the neuropathy forum. The forum was far and away the biggest spirit booster in those early weeks following my diagnosis, Have a great weekend, John, and thank you again for these suggestions! ––Ray

In my Mom’s case, her doctor said the median of Vidaza treatments was an additional 5 months…. Fuzzy language… she wasn’t up for it… She was initially against receiving transfusions but now understands she may benefit from them cuz at the point she would likely need transfusions, she would be wanting something to boost her up… so far it hasn’t been needed…

Good morning, rjperk633 (@rjperk633), kobe2026 (@kobe2026), janetlen (@janetlen). Please forgive this "group" thank you. I do want you to know that I appreciate your replies to the question I posed only late last night. I want you to know, too, that I have shared your replies with my partner. Your words will be much a part of the discussions she and I will be having this weekend. And speaking of "weekends"––I wish you all a fine, fine weekend, and again, thank you for responding to my post! ––Ray (@ray666)

Have you or anyone you know dealing with MDS ever enjoyed a remission? Or even a partial remission? My partner has been told that she's to do seven days chemo, followed by three week's off, then another seven days chemo, a cycle she'll have to continue for the rest of her life, that, plus recurring blood draws and, if indicated, needed transfusions. Does any of this sound familiar?

@ray666 MDS is incurable. When I was taking Revlimid, my HGB went into high normal readings. Other values were low, but some think that is partial remission. It isn't. The drugs/transfusions prolong our lives. It is Palliative care. Yes I will be on some combo the rest of my life unless I have a Bone Marrow Transplant which is true for all of us. With BMT there are other issues. It sounds like your partner will have infusions, which is different than the oral chemo. Revlimid was initially 3 weeks on with 1 week off; dosage and duration changed over time due to effect ont PLT and Neut.

Hi, Janet

I've had to learn not to be rattled by that word "incurable." I have chronic idiopathic axonal polyneuropathy, which is also incurable. What my partner is wrestling with right now is finding an acceptable balance point between what therapies are critical if she wishes to preserve her life and how much of her life will she be able to retain once she has settled upon a therapeutic path.

Thank you for your comments! They are deeply appreciated.

Best wishes,
Ray