CMML vs CMUS

Posted by beewoman70 @beewoman70, Sep 18, 2023

Pre-CMML

Hello Everyone,

I was recently diagnosed as "on the verge between Clonal Monocytosis of Undetermined Significance and Full-blown CMML. My next generation sequencing NGS test revealed mutations in TET2 and SRF2. I have low platelets of 117 and bone marrow biopsy revealed monocytois of 23 % of WBC.

Presently I am under "watch and wait" and will have monthly blood work to monitor counts.

Looking for support from anyone with similar statistics.

Thank You Very Much,

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

Hello @beewoman70 and welcome to Mayo Connect. Your @name is intriguing…are you a beekeeper by any chance? 🐝

CMML or Chronic myelomonocytic leukemia can be a slowly developing blood condition. Which is why you’re in what’s called a ‘watch and wait’ pattern. But a kinder term is active surveillance. With monthly bloodwork your doctor will look for trends and will monitor any changes in your blood numbers. Treatment wouldn’t be necessary until your numbers suggest it’s time. You were recently tested and found to have some acquired mutated genes which contribute to the cause. There’s nothing you’ve done to cause this to happen…life tosses us a curveball sometimes.

I’m posting an informational article below from Healthline which gives a good overall explanation for how CMML develops and possible treatments. I know this sounds frightening but knowledge is power. And from experince, having that knowledge about a disease can help our minds process what’s going on and then deal with it head on.

https://www.healthline.com/health/leukemia/chronic-myelomonocytic-leukemia

There are a few members in our forum who also have CMML and several conversations over different areas. So instead of posting all the discussions I think it would be helpful to bring @encb27 (whose mom has CMML and undergone treatments with Vidaza recently), @tbone45 who has had CMML for several years and may be able to share their experience, @take2deepbreaths whose husband was diagnsosed 2 years ago, and @cblowers1 who is in treatment for CMML, into the conversation.

Here is one discussion in the forum (link below). You can find others by typing in CMML in the top search bar.

~Looking for recommendations of doctors with expertise in CMML
https://connect.mayoclinic.org/discussion/cmml-2nd-opinion-docs/
myelomonocytic-leukaemia-cmml (with @joesim @cblowers1

When do you have your next set of blood numbers run?

REPLY
@loribmt

Hello @beewoman70 and welcome to Mayo Connect. Your @name is intriguing…are you a beekeeper by any chance? 🐝

CMML or Chronic myelomonocytic leukemia can be a slowly developing blood condition. Which is why you’re in what’s called a ‘watch and wait’ pattern. But a kinder term is active surveillance. With monthly bloodwork your doctor will look for trends and will monitor any changes in your blood numbers. Treatment wouldn’t be necessary until your numbers suggest it’s time. You were recently tested and found to have some acquired mutated genes which contribute to the cause. There’s nothing you’ve done to cause this to happen…life tosses us a curveball sometimes.

I’m posting an informational article below from Healthline which gives a good overall explanation for how CMML develops and possible treatments. I know this sounds frightening but knowledge is power. And from experince, having that knowledge about a disease can help our minds process what’s going on and then deal with it head on.

https://www.healthline.com/health/leukemia/chronic-myelomonocytic-leukemia

There are a few members in our forum who also have CMML and several conversations over different areas. So instead of posting all the discussions I think it would be helpful to bring @encb27 (whose mom has CMML and undergone treatments with Vidaza recently), @tbone45 who has had CMML for several years and may be able to share their experience, @take2deepbreaths whose husband was diagnsosed 2 years ago, and @cblowers1 who is in treatment for CMML, into the conversation.

Here is one discussion in the forum (link below). You can find others by typing in CMML in the top search bar.

~Looking for recommendations of doctors with expertise in CMML
https://connect.mayoclinic.org/discussion/cmml-2nd-opinion-docs/
myelomonocytic-leukaemia-cmml (with @joesim @cblowers1

When do you have your next set of blood numbers run?

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Hello Lori,

Thank you for your reply. No, not a beekeeper but I imagine my ancestors were. Beewoman is a nickname I acquired when I played softball on a women's city league.

Anyway, you all can call me Lori. My next blood work is on Sept 28 and monthly thereafter. I am still awaiting a formal pathology report from Cleveland Clinic. Mayo Clinic did the initial analysis of NGS data but deferred to my Hematology Specialist at University of Toledo Dana Cancer Center to render final diagnosis. My doctor at UTMC referred me to Cleveland Clinic Taussig Cancer Center whose leukemia specialist asked my NGS data to be reviewed by Cleveland Clinic Pathology. My doc at Cleveland Clinic just gave me a brief message indicating that I am at the verge of CMUS and full-blown CMML, I am anxious to see the formal report from pathology that I hope will provide more detail.

Thank you for the links also to other Cmml posts. I will be in touch.

Lori B

REPLY

Hi Lori,
Just now seeing your post from September.
I have variants of the same two genes and also have a similar platelet count. On W&W two years. Followed at UVA's Cancer Center.
Please feel free to message me should want to connect to discuss.
If not already known to you, you might want to consider joining the private CMML Facebook group.
Best of luck to you.
Joe

REPLY
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