Myelodysplastic Syndromes

What to expect when transitioning from MDS treatment to palliative care?

I’m a 83 year old male who worked full time until May 2023 when I was diagnosed with anemia! After a couple of bmb it was determined that I had MDs-EB. Subsequent testing reported two mutations (RunX1 and FL3B1). I participated in a clinical trial from 05/28/2924 to 01/31/2025. That didn’t seem to work (SEGE1920-AZAcitidine with SEA-CD70) 2/10/2025 chemotherapy: azacitidine & Venetoclax (200 mg of Venetoclax with 200 mg of Fluconazole). First cycle 28 days bmb results 2 to 3 % blast. Cycle 3: 05/092025 - Venetoclax reduced to 14 days due to profound delay in recovery. Cycle 4: 08/28/2025 - Venetoclax reduced to 10 days due delays in recovery. Latest bmb reported 12.4% blast Currently on twice a week count checks and receiving platelets and or blood as necessary. Currently looking for a research facility but have requested palliative care services!

What hemoglobin levels typically trigger MDS treatment to start?

Diagnosed with MDS 11/23. Been having regular blood tests every 3 months to monitor levels. Is there a standard level of RBC and hemoglobin where treatment starts ?

Should I continue MDS chemo treatment at 78? Quality of life concerns

I am a 78 year old male with relatively decent health for my entire life. A couple of months ago I noticed blood bruises on my arms and didn’t think much about it. I thought it was from bumping into things or from playing with our dogs. My primary physician ordered some blood tests and eventually sent my to see an oncologist. He ordered a bone marrow biopsy and that, along with all the blood tests, showed that I had developed MDS. Did not see that coming, especially as I learned about this disease. I have now had one round of chemo treatments consisting of 14 injections in my abdomen in 7 days. I am now on a 20 day break before starting round two. I have decided on the Mediport method as the injections are very painful after a few days. In looking ahead, I am wondering if I should even continue with this as I feel terrible most of the time. Given that there is no cure and the quality of my life is definitely declining, I am not sure how to proceed. I don’t want to be a burden to my family but feel increasingly unable to contribute much to the household. Not sure how to proceed. Let me know if anyone else with MDS can relate to what I am feeling. Thanks for reading this, Mike Beutel

Has anyone had success with Reblozyl injections for hemoglobin levels?

My hematologist recently started me on Reblozyl injections every three weeks. Any success to report on this drug for HGB.

Living with Low-Grade MDS: Seeking Advice and Support

Was diagnosed approximately a year ago with low-grade MDS. Been seeing a hematologist for a year now getting regular lab work done. WBC counts are still low when I find myself taking naps 3 to 4 days a week. Not currently taking any medication. Sort of feels like I’m a ticking time bomb scary time for sure. Appreciate any thoughts on the matter.