Skip Navigation

We are a "very rare" group??

Hi, I'm MommaB

Hi all! I havent got a firm diagnosis yet. I either have Chronic Myelomonocytic leukemia (CMML) or MyeloDisplastic Syndrome (MDS) Leukemia. I am stage 0 at this point. Found out as a fluke when I insisted on a bone marrow biopsy because of continuous high monocyte counts and low platelets. Biopsy came back with changes in DNA that pointed to either MDS or CMML. (Blast count is 0.6%)

At point of diagnosis my monocytes flipped into normal range, which started a 6 month diagnosis “clock” over again. Now monocytes are flipping with each blood draw. Sometimes really high, sometimes normal. Continuous low platelets. Last blood draw showed low neutrophils also.

How long did it take for your diagnosis? I am currently waiting for 2nd bmb and flow cytometry for blast counts. I was told that blasts are what they are concerned about.

So now I am just playing the waiting game.

  • Post #1
  • Wed Apr 24, 2019
I'm ForrestB, and I'm a survivor of Prostate Cancer

Looks like MDS is pretty rare. We are actually going up to Rutgers in New Brunswick tomorrow for a 2nd opinion from Dr. Schaar. The hematologist down here in our part of NJ (closer to Philly) doesn’t seem very familiar with MDS at all - and it shows. Hoping to have a clearer picture of what is happening after tomorrow.

I understand your frustration, though. This has been dragging on since January and a clear picture of what is happening would be lovely at this point.

~Deb (wife)

  • Post #2
  • Mon May 13, 2019

Add to Discussion

Sign in or Join (free) to add to this discussion. Add to this discussion