Started with AML now MDS ?

[Lizzz]

Does anyone have experience with AML first, remission and then a subsequent diagnosis of MDS. I am a 52 year old female who was diagnosed with AML in April of 2011. Went through 4 rounds of Chemo, and countless platelet, and blood transfusions......120 days of hospitalization within 6 months.....I have been in remission and living a full life since Sept 2011.
Had a BMB on 4/25/12 waiting for results. Dr. suspects MDS that was never diagnosed prior to AML. I don't know what this means.........anyone out there with a similar experience......

[mausmish]

Hi Lizzz - I was initially diagnosed AML at age 56 because bmb showed 20% blasts. Subsequent showed 17% so MDS. Either was bad due to many cytogenetic abnormalities. Vidaza put me in full remission and then I had a bone marrow transplant 17 months ago. I am currently 58 years old.

[Lizzz]

Thank you....Were you treated for AML when that was the first diag or were they able to determine MDS right away ?....My thinking is that in all the reading I'm doing about MDS the fear is in progressing to AML.....If I started there at AML then what does that mean if I already went through the MDS phase without diagnosis..... I know my Dr. will clear all this up when the BMB results are in, I'm just in deep fearfull thinking mode......I have contacted my sister and brother about testing for match, and they are both more than happy to participate.....Congratulations to you on your remission !

[cheri]

That is exactly my story. Undiagnosed MDS, went to AML, got chemo, went into remission, and ended up with MDS again. Spent the last 2 1/2 years battling and now am tranfusion dependent on blood and platelets.
Just got home from a week in the hospital with a bad bout of diverticulitis.
Have had numerous unspecific fevers, hospital stays, GI issues, Pnuemonia.
Diagnosed at 52 1/2; hoping to celebrate 55 on May 15th!

Live the best you can while you can and don't worry about the future. Everybody's experience varies so much. This disease is a roller coaster ride and you are best off to just go with the flow when possible. Live those travel dreams while you are not tied to a hospital...enjoy every moment!

[mausmish]

Thanks! In my case, the treatment was the same either way regardless of whether the label was MDS or AML. They started me on Vidaza immediately and recommended a transplant asap. I was resistant to the idea of transplant so it's a good thing the Vidaza worked so well for me while I was wrapping my mind around the idea. A big problem with MDS is that it can be so different for each case - it can "smoulder" slowly for years or progress rapidly to AML. Depending on the chromosome abnormalities, MDS in one person can be more serious than AML in another. The BMB results are essential for a proper diagnosis.