High Risk MDS with Complex Presentation

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• December 30, 2017 at 9:50 pm #34734
  Brent Lang

  Participant

  Hello All:

  I’m a 43 yr/old male in otherwise good health- diet, exercise etc. I was diagnosed a few weeks ago with MDS RAEB 2 high risk (15% blasts) multiple mutations and very low WBC and Neuts. Docs had a difficult time with diagnosis MDS vs. AML (first said AML) due to a complex presentation saying it was hard to distinguish between mutated, partially mutated and normal cells. Just started Vidaza 7 days on, 21 off for a few cycles with the intent of getting to stem cell transplant ASAP. Due to my age and relative health, I am feeling confident we can beat this (young kids…no choice!), but the fact that there was some confusion around the bone marrow biopsy from a team of top hemo/oncologists does have me (and them) somewhat concerned. At this point, I am in Ontario, Canada and in good hands.

  This site looks very informative, I will scour but if anyone has any comments on their similar journey, I would be happy to hear…

  • This topic was modified 6 years, 4 months ago by Brent Lang.
  December 30, 2017 at 10:19 pm #34736
  Sherry Pratt

  Participant

  Brent.
  Email me at pratt8075@aol.com
  Second opinions are a must.

  December 31, 2017 at 7:17 pm #34737
  rar

  Participant

  i had a diagnosis similar to yours. I had related donors so it only took 2 months to get a SCT. That was 3.5 years ago. I am in remission but still fighting GVHD. Got a second opinion asap. You are on the cusp of AML.

  Ray

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