My MDS does not respond to treatments. What's next?

My doctor seems to think that it's not a great option for me. Almost 78, fair shape but overweight, possible heart issues, though none recently indicated. In his opinion, yes, I could probably find somewhere, such as Sloan, Mayo, or Moffitt, to do the Transplant, but he really wonders what the doctors' motives are if the prognosis is not great. I'm starting to be transfusion dependent, hoping to only need transfusions every 3 weeks. Maybe I'll get lucky, and something will appear in the meantime.

Amen to that. My wife had platelets and hemoglobin transfusions twice a week for a year and a half. We would not have had that time together otherwise. It’s a precious gift to have that available.

My husband finished his 61st platelet infusion today. No, that’s not a type o. We thank God for the blessing of him being able to get infusions.

I wish you well in that venture. It's a bitter-sweet situation. When I was very weak, they told me that I could not survive a stem cell transplant. They have to radiate you pretty heavily and then get things started all over again. Seems like a Young Person has a better chance, but then.... you never know. I'll follow my current path as long as it continues to work for me... well, Of course I will! Ha. I was told by my Dr. on my last visit that there was another new Drug just clearing approval. So... if this one plays out, I have something else I can try. Best wish to you in your journey.

@snakebite you are a wise man. You have had so many years of treatment and a wealth of information to share. Yes IMO God has a hand in all of this, and brings me hope. I love the term "bag a blood." @jeffreykassover1 don't give up finding a treatment option. University Hospital, Anschutz, in Denver does not have an age limit for Stem Cell Transplants. You might try contacting the Blood Cancer clinic there(https://www.uchealth.org/provider/marc-schwartz-md/) I saw Dr. Schwartz yesterday. I am on the transplant path again.

I certainly don't have the answers. I can only say that I've been down and almost out a few times. There was a time when I was totally dependent on transfusions. HGB around 6, and everything else was just as bad. The bags of blood did help me tremendously. I don't know how long that can go on, I was never able to find an answer to that question. So... I just hung in there as though it would be indefinitely. For me, the good news was that between the chemo and Vonjo, things picked up. That lasted for about a year before it started to fade, and I was back on transfusions. Sure enough, along comes Ojjaarra, and it picked me up again. It's been about a year and things are still looking pretty good. Don't know how long things will last this time, but if things turn down again, I'll be back in line for a bag a blood. I don't preach to folks, never have, but IMO... yes, MY OPINON, God has a hand in all of this. I don't think there is any game playing, but having faith helps me to deal with things. One way or the other, things will eventually come to an end, and I want to be ready to move on when that happens.

I am transfusion dependent as well. Of course, I look at it as my last resort since nothing ever seemed to work. A stem cell transplant is not really a good option at my age, (78 in Nov.) Hopefully, with grace, I will be ok for a while, and then who knows? It sucks, but I don't realistically see any options. Trying to stay strong.

I don't think any of us "want it". However, it's not really any different than taking the meds prescribed for us, other than where it is made.

That’s understandable. That’s what makes this group of diseases so bad. They don’t leave much choice.

Me too.