Diagnosed with a myeloid neoplasm (chronic myelomonocytic leukemia)

Posted by judithiam @judithiam, May 8 4:37pm

I have been diagnosed with myeloid neoplasm, favoring chronic myelomonocytic leukemia with marked eosinophilia, grade 1, myeloproliferative subtype. What is this? My bloodwork was off and a bone marrow was completed. This is wat they are leaning toward as my disease presently. Presently, I feel healthy.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

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.

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Profile picture for Lori, Volunteer Mentor @loribmt

Welcome to Connect, @susanmarie52 Being newly diagnosed with CMML-1. (Chronic myelomonocytic leukemia I’m sure your head is spinning with a zillion questions.

Though the letters are the similar, CMML is not the same disease as CML. They are considered chronic forms of leukemia but with different characteristics.
I know, it can be confusing! The initial replies in this particular discussion are regarding CML.
However, we have several other members in the forum who have experience with CMML either personally or through a loved one. Let me introduce you to a just few of the members off the top of my head. @carolgk @rogelling @ismatjahan007 @lmoser325 @sme225

There are numerous discussions about CMML and I wasn’t sure which one to recommend for you. But here the link to a quick search in Connect for CMML members so you can check out the conversations that are interesting for you: https://connect.mayoclinic.org/search/

What has your doctor told you about your CMML? You mentioned you’re in stage 1 with your current diagnosis. Will there be any treatments offered at this time or are you in active surveillance…just keeping an eye on things with labs every few months or so?

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@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.

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Profile picture for dhbskier @dhbskier

@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.

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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?

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Profile picture for Lori, Volunteer Mentor @loribmt

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?

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@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.

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