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kjjjrader (@kjjjrader)

Myelodysplastic Syndrome (MDS)

Blood Cancers & Disorders | Last Active: 1 day ago | Replies (25)

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Are there any members on connect with MDS (Myelodysplastic Syndrome). How long have you had MDS? What treatments have you had? What side effects have you gotten with treatment? Did you have a bone marrow/stem cell transplant? How did that go? We are looking to get any answers from people who have this cancer and how it is going for them.

We will be doing treatment at Mayo in Rochester. We are hoping to get into a clinical trial. Treatment will start after the new year.

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Replies to "Are there any members on connect with MDS (Myelodysplastic Syndrome). How long have you had MDS?..."

I posted more detail here, just a few posts below…. Revlimid reaction after 15 days – a significant rash, severe enough to discontinue. That was after Procrit failed – my husband – he had weekly Procrit injections at 40,000 units from March 2018 – November 2019. He has been severely fatigued since December 2017 prior to the diagnosis, never having regained enough energy to live a "normal" life. He can walk about 100' at a time, then fatigue sets in. Sometimes he cannot even walk that far. He sleeps 5 or so hours during the day, sleeps all night, wakes up tired, stays tired all day, and cannot perform routine tasks. His hemoglobin now hovers around 8, sometimes going as high as 8.3 during the last six months.

A bone marrow assay with full DNA sequencing at Mayo revealed the 5q about 8 months after the initial bone marrow aspiration which was non-specific but suggested MDS. We are told my husband will be on Vidaza (because Procrit and Revlimid failed) until Vidaza fails, an unknown period of time; then transfusions. We are realists about this, knowing there is no cure, and that his condition will become progressively worse. Too old for stem cell – age 78.