Welcome to Connect @kmak1939stuart. I am sorry to hear about your diagnosis of MDS and the side effects you’re having with the treatments. There seems to be no dignity with some of these diseases and their remedies. I had MDS’s ugly step-sister, AML which can be very aggressive. Higher risk types of MDS can have it morphing into AML with the proliferation of the immature, ineffective white blood cells called blasts. At some point, if the blasts start outnumbering the red blood cells, ultimately it leads to the final curtain, so to speak.

Exhaustion and fatigue can be the nature of the beast and generally the worst of symptoms as it progresses. This happens as your blood numbers, especially your red blood counts dip to below normal. The lack of oxygen robs you of any strength. As long as you don’t get ill from any other causes the end can be quite calm. But having an immune system this compromised it can set the stage for rapid infections.

You’re wondering about the final stages of the disease. I came perilously close to my end (less than 24 hours) and I have to admit, if one has to get cancer this was the way to go. There was no pain, just a rapid daily decline over 3 weeks of no energy and dimming like my light was being snuffed out. I frankly could have just gone to sleep without waking. It was that easy.
My disease progressed that far because for 3 weeks in a row, my primary doctor would look at me, tell me I was fine and to go home and rest. In spite of me telling her, at 65, I’ve never felt this sick in my life. Finally the 3rd visit my husband carried me into her office because I physically couldn’t do it and demanded blood work. It came back hours later that I had leukemia and needed an immediate transfusion or I wouldn’t have made it til the next morning. That’s how important those transfusions are!

Last year about this time, there was another member who developed AML at the age of 92 @crhilston. He wasn’t able to have a transplant. For some reason his doctors didn’t feel he could have any treatments either, which was sad. He seemed in good health otherwise so I thought there might be some abrogating meds for him. Anyway, he ultimately went into hospice. He and I had some very deep but pragmatic end of life discussions. Maybe you’d be interested in reading them.
Here is the link where we picked up most of our chats…between @crhilston and @loribmt
https://connect.mayoclinic.org/comment/871617/
What helped me with some of my side effects from treatment is having a cup of Activia yogurt daily with a teaspoon of ground flax. Also it helps if you can get at least 64 ounces of water down daily. These chemo meds can really mess up our inner plumbing so trying to keep things calm can help.
I promise you’re not alone here so please, if I can help you out with anything just talk to me. Do you have friends and family around you for support?