CMML questions, if anyone can help

[arcticblast]

Hi,

One year ago, I had some mild abnormalties show up in a BMB/BMA that suggested a chronic myeloid disorder. Doctors are scratching their heads as I continue to become more physically unwell, only knowing there is something wrong with my blood but they aren’t sure what yet.

My CD markers off my BMA possibly indicate the development of CMML due to CD123 (along with CD34, 5, 45, 13, 33, 38, 71, 117). Blasts were at 2% with the core normal yet the aspirate showing slightly abnormal cells.

My CBCs are abnormal cyclicly. There is a proliferation in the myeloid line about every six months (neutrophils, monocytes or eosinophils). In early December, I started having a lot of achiness in my spleen area (feels like a gallon ziploc baggy sloshing with water inside . . . engorged and distended, I geuss). My next hem/onc visit isn’t until spring so I really don’t know if my spleen has become swollen.

Can any share their experiences with diagnoses for CMML? From what I’ve read, CMML can be myeldysplastic (MD-CMML) or myeloproliferative (MP-CMML).

Thank you.

[Jack_dup1]

I’ve had a little experience with CMML. I was diagnosed April 2003, following a routine blood test that showed slightly low platelets and low whites, since then it has progressed to slightly low platelets (MDS) to high whites (MPD). I to have had spleen problems, not like your, mine was quite enlarged and hard, I can feel it quite easily. The Doc said she wished she had some students with her my last visit just to feel it. If you e-mail me, I will be glad to add further info including a spreadsheet of my counts for the last 4.5 years. We are all different, but it may help a little. Learn all you can and don’t believe everything you read, especially prognoses.
Jack
j.saffell@mchsi.com

[Jimbob]

Like Jack said, we are all different and what happens to one may not happen to others – in the way the disease progresses or may be treated -but get all the information you can from current sources so you can make informed decisions. Without a doubt, most of the prognoses you get will be based on “old” info. Drop me an email or private message and I’ll try to provide resources and info from my experience.
Jim

[arcticblast]

Thank you for your replies.

I did speak to my hem/onc today on the phone and he is willing to do more tests. He seemed willing to help.

We will be doing another intracellular flow cytometry off peripheral blood to see if similar CD markers show up. He also wanted to do another bcr:abl PCR; I’ve had one positive result and one negative result a few months apart. He said he wanted to include a test for a rare genetic blood disorder–to which I was open, if anything, to rule it out.

Since I’m on yet another round of antibiotics for another mild bacterial infection I was unable to fight off, I’ll be getting a CBC on my last day of the antibiotics to see if my neutrophils are actually a little low. I’m wondering since I keep coming down with chronic bacterial infections if this is pushing up my neutrophil count and, although in the normal range, if it is really high (for me).

If someone is mildly to moderately neutropenic and comes down with an infection, would their absolute neutrophil count pop into the normal range until the infection is resolved? No one has ever done a CBC directly finishing a round of antibiotics to see where my neutrophils are at. I’ve only ever had CBCs when I’ve felt unwell with persistent low-grade fevers and bone pain. The antibiotics tend to nix the fevers for a short period of time before they return and are persistent until more antibiotics are taken.

I’ll be picking up the lab order next week and will post back when I receive my results. If I have questions, I’ll probably email you both pesonally.

Thank you again for your assistance. The info you provided was very helpful.

[hmblume]

I was diagnosed with ITP about 12 years ago, and then with CMML 4 years ago. The hematologist gave me literature saying my expected life span was 2 years. Don’t believe it. I am on the MDS side of the MPD/MDS divide. I feel a bit like a fraud, in that CMML has not much affected my life style and I feel good, after taking precautions re avoiding bleeding (no aspirin or anti-inflammatories, line nostrils with Vaseline nightly, moisturize skin). I have acquired an enlarged spleen. My period of not being affected may not last, but I enjoy it while I can.
Many with ITP (low platelets) seem to have similar symptoms; there are two platelet disorder support groups (PDSA/PDSO), one in USA and one in UK. You may learn something there.
Best wishes HMB

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