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

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.

Until MDS, my body produced my blood. Relying on someone else to produce my blood for me is a dependency I never wanted.

I get platelets and rbc infusions for months now
They keep me alive so I am thankful
Also the infusion nurses and patients are so nice
Like a family

We are all dependent on blood for our life force. If the disease makes transfusions the necessary way to get it then you will need them.

@snakebite Thank you for this reply. As my disease progresses I have been dreading transfusions. I too feel it puts me on a track of last resorts, but also on a track of dependency. Your tough love gave me hope. First feeling better, but also your longevity. You would not have had the opportunity with Ojjaara if you had given up. So, when I get there, I will suck it up and have the transfusions.

After sliding down the hill with MDS/MF for years, I finally reached a very critical point. I didn't want to go the route of Blood transfusions, because it just made me feel that was putting me on the leg of last resort. I will be 78 next month. CBC finally got so low that I was having a hard time just getting around without being so fatigued that I had to just sit down and try and recoup... which rarely happened. I finally gave in and had a Blood transfusing. Within hours, I felt better than I had felt in many years. It was a new lease on life. I continued getting transfusions, and of course, my CBC came way up. I felt great after each transfusion. As time went by the length of that exuberance decreased, and I started getting two bags. BANG right back up to the top. During this time, a new drug, Ojjaara, arrived on the scene. I started it, and within no time was off of all transfusions. My CBC has remained well above what it has been in over 10 years. That was over a year ago now. I am full of energy and resumed my old activities. Walk 2 mi every morning and attend an exercise class 3 times a week. I travel with my RV and life is good. It was the Blood transfusions that got me over the Hump and allow me to try this new drug. I can't say if you will have the same results, but what the heck... it doesn't look to me like you have a line-up of options. IMO, suck it up and get transfused!

This was a good contact for aplastic anemia trials with Dr. Neal Young and I think she could direct you to who you should speak with at Nat. Institute of Health:
Ivana Darden, R.N.
National Heart, Lung and Blood Institute (NHLBI)
National Institutes of Health
Building 10
Room 4-5362
10 Center Drive
Bethesda, Maryland 20892
(301) 827-2988
ivana.darden@nih.gov

Another great resource:
http://www.aamds.org
Talk to Leigh Clark, head of patient services
Also
http://www.aamds.org/mds

If you have a contact, I would appreciate it. Thank you