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My mom recently got diagnosed with CML, we're confused, help?

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#1 Tracy357


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Posted 22 June 2014 - 12:35 PM


My mom has been sick for 2 months.  After numerous tests, doctors, etc. She was finally referred to a hematologist.  He ordered more blood work and a bone marrow biopsy.  When he got the results he sent her to an oncologist specialist.  He told her you don't have leukemia yet, but you could develop it so you need to see him. She went this past Tuesday. She had welts on her legs, bruising on her arms, and swollen neck glands. So, the doctor admitted her.  They did a biopsy from her neck gland and leg tissue the next day.  We got the results on Friday. The biopsies were clear.  I was not there so I didn't here the doctor myself.  My parents told me he said "you don't have leukemia yet, but can develop it."  Her blast count from the bone marrow biopsy is 16%.  Her papers when discharged reads "evolving leukemia from background of CMML (Chronic Myelomonocytic Leukemia)"  She will start chemotherapy this week for 5 days a week for a month.

We do not understand how she does NOT have leukemia but her blast is 16% and the papers read background of CMML as well as she is doing chemo for a month. I am just trying to get a better grasp on this. This is all new to my family and I am trying to find out as much as I can and get the most support. She is 66 years old, but I am really hoping she can fight this. Thanks for any info or advice!



#2 hannibellemo


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Posted 22 June 2014 - 06:30 PM


I'm so sorry to hear your mom is ill. She does not have CML (Chronic Myeloid Leukemia) however, she has CMML which is a totally different disease. Someone with more knowledge than I have may be able to give you more information. I found this on the American Cancer Society website that will give you more information on her disease.


There is a discussion board on this site for the myeloproliferative diseases:


These links are acting weird, you may have to copy and paste for them to work for you.

Good luck to your mom and to you and your family! The time of diagnosis is such a scary confusing time.


Message was edited by: Pat Otto



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DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>

#3 Trey


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Posted 22 June 2014 - 08:43 PM

We here have CML, which as Pat described is different than CMML.  But we can still help you understand the issues.

CMML is most easily described as a blood cancer (leukemia) which results in too many monocyte cells, and these monocyte  cells are cancerous, meaning they are out of control and they are generally ineffective at doing their job.  Monocyte is what the second "M" in CMML refers to.  Monocytes are one of several types of white blood cells (lymphocytes) which make up the immune system.  Monocytes generally help clean the blood of debris and help destroy invaders (pathogens). 

Let me explain some things based on what you said:

1) "She had welts on her legs, bruising on her arms, and swollen neck glands."  This is due to the low blood counts (anemia, low platelets and low white blood count, which means a suppressed immune system).  Also, she apparently has very high monocyte count -- see her Complete Blood Count (CBC) report.  The lymph nodes are trying to handle the problem but are being overwhelmed and "clogged" with excessive monocytes. So her overall white blood count may be low, but her monocyte count is high.

2) "The biopsies were clear."  Lymph nodes would have excessive monocyte cells (plasmacytoid monocytes).  Again, the monocytes are out of control.

3) "My parents told me he said "you don't have leukemia yet, but can develop it."  He meant that she has  been diagnosed with CMML leukemia, which is a type of leukemia, but it has not yet progressed to acute myeloid leukemia (AML), which would be a blast count above 20% (hers is 16%).  Without treatment (chemotherapy, and maybe other options) it would very likely progress to AML leukemia.  So she has leukemia, but it could progress to a worse form of leukemia.

Given the blast count, she is in CMML Stage 2.  That is somewhat advanced, which is why the Onc wants to proceed with chemo soon.  The goal is not a cure, but to control the disease and keep it from advancing to AML leukamia. 

Sometimes it is worth considering a clinical trial, which is participation in a study with drugs which are not yet approved, or not approved for that usage.  The possibility of a better outcome must be weighed against the risks of the unknown.  Here is a list of current CMML clinical trials open for new enrollees which she could discuss with her Onc:


You will want to get a copy of the Bone Marrow Biopsy (BMB) report and relate what it says if you want us to explain her situation in greater detail.

We all hope this goes well for your Mother.

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