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Recently Diagnosed with MDS

This topic has 3 replies, 1 voice, and was last updated 4 years, 4 months ago by David.

Viewing 4 posts - 1 through 4 (of 4 total)

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October 26, 2019 at 11:01 am #49266

Randy Mosley
Participant

Hello,
My name is Randy. I am a 64 year old male. Under going treatment with Vidaza for MDS. Just completed my 4th round. This is preparation for stem cell transplant. How long does it take for your Lab numbers to begin to rise if they are going to? How long does it take after treatment for numbers to rise. This affects my RBC,WBC,Hemoglobin, and Platelets. Just need some words of encouragement. Thank you.

November 1, 2019 at 3:29 pm #49314

JAMES KAMP
Participant

Hi Randy,
I am a 60 year old male that was diagnosed in Nov 2016. I am about to begin my 14th round of Vidaza on Monday. I don’t think I am tough enough to go through the transplant. I saw improvement in 3 months on Vidaza and in 6 months had close to normal numbers (they vary allot within the month). Remember that everyone is slightly different and responds differently. I hope the transplant goes well for you.

November 5, 2019 at 12:47 pm #49362

Randy Mosley
Participant

Thank you James for your response. Both my Doctor’s feel I was strong enough to go through the transplant. It is a slow process. I am hopeful they will get to where I need to be for the transplant. It would be encouraging to know the Vidaza is working. I pray in due time I see evidence of that. My Lab numbers are becoming more consistent and holding where they are. No further decline so far. Thank God. Dr.’s told me my Platelets would be the first numbers to come back up. But one Dr. told it looked like my WBC was coming back up first. Lab numbers are still way low. Could be worse I guess. Thanks again.

December 3, 2019 at 12:17 am #49800

David
Participant

Your treatment choices are your own, and I support any decision you make.

That being said, they wanted to “rush” me into a stem cell transplant at diagnosis too. I’m 53 and other than the low risk MDS I’m in great health. I was diagnosed 2 years ago, and am transfusion dependent, I’m still healthy other than the MDS. I’ve tried Revlimid, it didn’t work. Am currently trying Vidaza, and it’s too early to tell. If it fails, then I’ll continue transfusions until iron overload becomes an issue, with chelation drugs it looks like 2 – 4 years before that will happen.

Bone marrow biopsy results and iron levels are my decision points. If they or my over all health start to become an issue then I’ll open the stem cell door. My research shows if I would have immediately went to stem cell the survival rate was 60% (bit better than a coin flip), waiting until iron is up and/or disease progression shows on my biopsy drops survival rate to 53% (still a bit better than a coin flip). 7% reduction in odds vs 4 – 6 years of “normal” life (I’m still working full time, vacationing, etc. Just with more naps) moved my decision to wait.

Again, I know nothing about your version of MDS or how much research you have done. I do wish you the best with your struggle and hope to hear back from you that you are 100% cured.
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