Diagnosed with a myeloid neoplasm (chronic myelomonocytic leukemia)

Here is a very recent free presentation on CMML (Chronic Myelomonocytic Leukemia (CMML).
This webcast, featuring Dr. Douglas Tremblay from Icahn School of Medicine at Mount Sinai Tisch Cancer Institute in New York, NY, focuses on chronic myelomonocytic leukemia, current and emerging therapies, side-effect management, quality-of-life issues for patients, and the importance of communicating with your treatment team.
https://www.cancereducation.com/CMMLArchive/home.html
You might also be interested to know Blook Cancer United also has a First Connection program that can connect you to someone with CMML for a live conversation.

@loribmt
I have just been diagnosed with CMML but based on my blasts and monocyte count (which is high but I am advised not shockingly high), my hematologist suggests just monitoring with blood panels often. My next one is July 1. He indicated that treatment may or may not benefit me at this point. Of course marrow transplant is last resort. Does this sound appropriate? I am not asking for medical advice - only people's thoughts based on their experiences. He even described it as CMML-0. My monocytes did jump way up since my last blood panel, however, which was a bit alarming to my medical team. Thank you.

Hi @dhbskier There are different subtypes of CMML (Chronic myelomonocytic leukemia) so your hematologist most likely will have run tests to determine the type and staging of your disease. You mentioned, he described it as being CMML-0. Generally, there are 2 stages…CMML-1 and CMML-2. So if you’re in 0 stage that would indicate there’s not much progression of your disease and if you’re not experiencing symptoms, your doctor feels it’s not necessary to begin treatment at this time. That’s not uncommon in early stages of some blood diseases. Monitoring labs on a routine basis is the normal way of watching for any changes or trends in blood results.

According to Cancer.com (formerly the American Cancer Society) “ For people who aren't having symptoms from CMML, treatment might not be needed right away. Instead, doctors may just watch the CMML closely.”

Here’s the link the Cancer.com and their information on CMML. There’s an extensive menu to peruse through:
https://www.cancer.org/cancer/types/chronic-myelomonocytic-leukemia/treating/general-approach.html
How was your CMML discovered? Were you having symptoms that led to evaluation or was this found with routine labs for a physical?

@loribmt, dhbskier

I was having no symptoms to my knowledge and had no idea about the CMML. My only curse is plaque psoriasis which I now understand can be aggravated by high monocytes, which I have. So I suppose I was and am having that symptom if you look at it that way.

A friend of mine here in Montana informed me of this program at Mayo and strongly suggested I apply and go just as a major intense checkup type of thing. So, the mention of CMML was a shock I am still dealing with. I guess thank goodness I went! I would not know.

Thank you for the article and I will review it.

Mayo asked me to be treated by a local hematologist in my city, who incidentally interned at Mayo, as treatments require physical presence and it would be much more convenient. But when I finally saw the local hematologist, his recommendation was just exactly what you iterated - treatment may not be necessary right now and we should monitor things closely. We scheduled full labs for July 1, and I am thinking that when I return to Mayo in August, I may have another marrow biopsy.

Thank you and I am happy that it sounds like we are approaching it correctly.

@loribmt

Hello, sorry I didn't see this sooner. I am on active surveillance and am being tested every three months at Mayo. So I do not have any recommendations yet from them as to treatment. I realize this is incurable, and the only cure is a stem cell transplant.

Hi @susanmarie52 It’s really encouraging that you are in active surveillance. Though there are different ‘types’ of CMML, some are less aggressive than others and slow to progress. So being able to just ‘keep an eye on things’ is reassuring. In situations like this, there’s nothing to be gained by treating early. Statistics show it doesn’t change the outcome. But delaying treatment until necessary prevents you from experiencing side effects of treatment until needed and also keeps the options open if/when you do need it.☺️ While there may be no cure besides the stem cell transplant, there are treatments which can make a considerable difference in the disease when needed.
Because this is a rather rare disease it’s also excellent that you’re with Mayo. Their specialists are 2nd to none…yep, I’m a bit biased with my own experience at Mayo-Rochester.

Mayo is also one of the leading bone marrow transplant specialists in the country as well, so down the road, if that is an option in front of you it may be worth exploring. I had a bone marrow transplant 7 years ago for an aggressive leukemia at the age of 65. I’m now 72, living my best 2nd life. ☺️ Is a stem cell transplant something you’d consider?