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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
Hi, I'm Ann N B.

I was diagnosed with del5qMDS in Dec. 2018 after a bone marrow biopsy in Nov. I had my 90th birthday in Apr. and also started 2 treatments of 28 days of Revlimid which was not effective. I am now getting Procrit shots and my red blood count has come up to 10. I would love to chat with someone who has MDS. It seems like an uncertain journey.

  • Post #3
  • Mon Jul 22, 2019
Hi, I'm Alex W.

I was diagnosed with megaloblastic anemia in 6/17 and after bone marrow biopsy with MDS in 12/17. I do not have del5q. I’ve had weekly shots of 60,000 units Procrit for 18 months which kept my RBC (Hgb) 10.0 to 10.6. Recently the range fell to 9.4 to 10.2 so I just added C-GSF (Zarxio) which will raise my WBC and ANC and may also raise my RBC in synergy with Procrit.
Revlimid has better success with del5q MDS but it has undesireable side effects such as causing low WBC and platlets in most people, so best to avoid if these are already low from your MDS. Celgene is expected to get FDA approval for Luspatercept by spring 2020. It is specifically for MDS associated anemia and will require a shot every 3 weeks. Can’t come soon enough for me. I’m 73 and otherwise in very good health and I continue to bicycle ride 100 miles/week.

  • Post #4
  • Sun Jul 28, 2019

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