Vague prognosis

[N Marsh]

My 69 y/o husband was diagnosed with MDS . He had already had thrombocytopenia. Of late, his platelets continue to drop to 11, 12, or 13k . They have always been in the 20’s. He underwent a fourth bone biopsy/aspiration. Now we wait.
I’m interested in knowing if anyone else facing MDS, has had to undergo more frequent transfusions. Is this a sign that the end of his life is growing near?

[bexar2120]

Myself, 61 y/o male. I also had MDS and thrombocytopenia; my counts continually dropped, and they were no where near normal range. Once the lower threshold at my facility was reached I received platelets. I will continue to receive blood and platelets transfusions, since I decided to receive supportive care and eventually hospice.

As far as end of life growing near- that is what you should be asking the healthcare team!
I have been on blood/platelet transfusions since November 2023. My diagnosed MDS progressed to Acute Myeloid Leukemia at that time.

My advice is make sure you have his personal affairs in order; will, medical/durable power of attorney, directive to physicians, beneficiary on financial accounts, etc.

[Janet]

I too have had the various cytopenias. When my hemoglobin was 10-11 which the Oncologists consider near normal, I was on Watch and Wait. When Hemoglobin dropped to 9 I started treatment. Currently Hemoglobin is normal, but other cytopenias still exist. I am not a candidate for transfusion until Hemoglobin drops to 8. I understand when I have a transfusion, I will feel better, but I am feeling better right now. There is no cure for MDS. We are all on palliative care. Treatments stop working after a while and then the providers try something else. If we can tolerate a stem cell transplant, then there is a potential to live a healthy life with someone else’s bone marrow.

[Author]

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