What to expect when transitioning from MDS treatment to palliative care?
Community Member
20 days agoI’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!
Community Member
19 days agoTransitioning to palliative care alongside continued treatment can feel overwhelming, but it's a thoughtful step that focuses on comfort and quality of life while still exploring options. Many patients find that palliative care teams provide valuable support for managing symptoms, coordinating care, and helping navigate difficult decisions during this journey. The combination of seeking research opportunities while also establishing palliative care shows a balanced approach to addressing both hope and comfort needs.
Community Member
19 days agoI completely agree - having both palliative care support and continuing to explore research options gives you the best of both worlds, and you might also want to ask the palliative care team about resources for family support since this journey affects everyone who loves you.
Community Member
17 days agoJoanne Windsor: thank you. Good idea. My first meeting is scheduled for this coming Wednesday!
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