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Myelodysplastic syndrome (disorder)

Hi, I'm VIRGINIA I M.

I was recently diagnosed with Myelodysplastic syndrome (disorder) and was told this was a pre-leukemia. Has anyone else been diagnosed with this? I’m wondering what the life expectancy is and how long before it actually turns into leukemia.

  • Post #1
  • Thu Mar 19, 2020
Hi, I'm ANNE B F.

I was diagnosed with MDS cancer in May of 2018. I had an allogeneic stem cell transplant on December 18, 2018. I had numerous transfusions of red blood cells and platelets while waiting for the transplant and 5 months of Vidaza chemo via subcutaneous injections. MDS does not necessarily mean you are going to have leukemia. There are treatments and maintenance for the disease and many people with less advanced MDS or differing underlying issues seem to be able to live many years without the need for more extreme treatment. Your doctor should let you know the severity and treatment plan. As a result of my transplant I have been in remission and feel pretty good. This is what I have learned along the way. Hope this helps and be well.

  • Post #2
  • Sat May 16, 2020
Hi, I'm ANTHONY R G.

I was diagnosed with MDS in Oct 2018 and had an allogeneic stem cell transplant on February 19, 2019. My oncologist’s bottom line was that the only cure for MDS was a stem cell transplant. He input my stats into a computer program which gave my life expectancy as two years without the transplant. In late 2018, the medical literature had a patient’s probability of getting through the first 100 days post-transplant as 80%. The probability of getting to 5 years was 51%.

A cancer diagnosis sucks, but you can beat it! Stem cell transplants have been performed for decades and the procedure improves every year. After almost two years, I am alive and doing well. My on-going issue is chronic graft vs. host disease (cGvHD), but it is manageable.

Faith, family, and friends. Every day is a blessing. Be Strong!

  • Post #3
  • Fri Jan 8, 2021
Hi, I'm RICHARD Q M.

I was diagnosed with Myelodysplastic syndrome (CMML-1) Because of my age (78 male), I am not a candidate for a transplant. The average life expectancy given is 8 months. Many other factors enter that picture such as viral and bacterial infections which could reduce the 8 month’s if not attended to immediately.

  • Post #4
  • Mon Feb 22, 2021

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