CMML Leukemia

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CMML Leukemia

by marley8 on Mon Feb 12, 2018 11:51 PM

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Hi everyone, I look forward to hearing from anyone who can help me understand this dreadful CMML a bit more, what I do know is vague. My father was diagnosed with CMML 3 yrs ago after having extremely high wbc and being hospitalized with pneumonia. Up until recently he has been treated with Vidaza but is not responding so is now going through his 4th cycle of Dacogen. Since Nov.2017 until date he has been hospitalized 4 timesin critical condition with pneumonia, pleural edema, severe lower extremity edema , enlarged spleen.and wbc up well into the 220,000, and rbc down 6.7, and high platelet count. I live away and have not always been involved closely with his treatments and etc. Dad tends to keep some things from us kids, not letting us know each time he is hospitalized , bloodcounts extreme. Since Nov.2017 he is having to have transfusions monthly . I have been caring for him since Nov. and won't leave his side, he grows more frail but is such a fighter and has such determination. He fought and won the battle with a rare type of colon cancer 2 yrs prior to being diagnosed with CMML and now continuing his fight although he grows weaker and sicker by the day and with each chemo treatment. I am asking for insight into this disease and support from those who have or are experiencing it. I appreciate any info you can give, because right at this point I feel the doctors are being very vague and at times are too hung up on "numbers and text book" they fail to look at the person as a human with a soul who is struggling to live and depending on them for answers. Sometimes common sense and compassion resides over blood count results etc.  God bless each of you.

RE: CMML Leukemia

by bobspez on Wed Feb 14, 2018 11:20 PM

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Marley 8, first I'd like to say that many people who have posted here have joined the private facebook group called

CMML FRIENDS

That group has much more traffic and posts than this forum does, so it's worthwhile joining to get a larger number of responses.

I also have CMML and am 71 and have been on watch and wait since Sept., 2016. 

CMML presents very differently for different patients. As far as the doctors go, the numbers are all they have to work with and they have to decide where to put their efforts based on the averages. I highly recommend you join the CMML FRIENDS group on facebook and post your questions and concerns there.

RE: CMML Leukemia

by marley8 on Thu Feb 15, 2018 01:24 AM

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Thank you Bobspez for the FB information. I hope you are doing well and many blessings.

RE: CMML Leukemia

by edsana on Thu Feb 15, 2018 11:18 PM

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Hello Marley8,

If you go to the Leukemia, CMML post with 600+ posts there are posts by "edsana" where I have posted my journey from diagnosis, chemo treatment, transplant, and recovery. I was diagnosed when I was just shy of 65 and I am now 67. After you read my posts, I would be happy to answer any questions you may have. I/ we wish your dad the best.

Ed

RE: CMML Leukemia

by Chris70l on Fri Mar 16, 2018 08:14 AM

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Hi I was diagnosed with call in 2005. I got the mutation pdgfrd 

 I responded to gleevec . This year will be 13 years  in complete remmisson . I' also a member of the facebook club called call friends. Tigers 279 members as of now. If you need other people to talk to . Request to be a member. It' a great group who understand . Hope your feeling well chris.

RE: CMML Leukemia

by edsana on Fri Mar 16, 2018 02:08 PM

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Chris701,

I'm confused. Were you diagnosed with CML (Chronic Myeloid Leukemia) or CMML (Chronic MyeloMonocytic Leukemia)? From what I understand they are not the same thing - (CML affects the myeloid cells in the blood and bone marrow, while CMMLaffects a specific myeloid cell called a monocyte, which helps to fight infections.) Also from what I understand CML is treatable by Gleevec. CMML is not treatable by Gleevec and requires a stem cell or bone marrow transplant.

Ed

RE: CMML Leukemia

by bobspez on Fri Mar 16, 2018 05:46 PM

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On Mar 16, 2018 2:08 PM edsana wrote:

Chris701,

I'm confused. Were you diagnosed with CML (Chronic Myeloid Leukemia) or CMML (Chronic MyeloMonocytic Leukemia)? From what I understand they are not the same thing - (CML affects the myeloid cells in the blood and bone marrow, while CMMLaffects a specific myeloid cell called a monocyte, which helps to fight infections.) Also from what I understand CML is treatable by Gleevec. CMML is not treatable by Gleevec and requires a stem cell or bone marrow transplant.

Ed

Ed,

From https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3193268/

"Recurrent reciprocal translocations, involving PDGFRA and PDGFRB, are rare in CMML; if present, they indicate that myeloblast/monocyte proliferation can be mediated by activation of phospho-tyrosine kinase pathways." [i.e. Gleevac]. 

From https://www.lls.org/sites/default/files/file_assets/FS17_CMM

"About 1 to 4 percent of CMML patients have an abnormality called a “translocation” (a piece of one chromosome breaks off and attaches to another chromosome, which can lead to the development of an “oncogene” (cancer-causing gene). In CMML, sometimes the translocation involves the PDGFR-β and TEL genes. Patients who have the PDGFR-β and TEL gene mutations may respond favorably to treatment with the drug imatinib mesylate (Gleevec®)."

RE: CMML Leukemia

by edsana on Fri Mar 16, 2018 06:53 PM

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Bob,

I learned something new today. I had never heard of this mutatiion or that it could be treated by gleevec. Thanks for the information.

Ed

RE: CMML Leukemia

by Chris70l on Fri Mar 16, 2018 07:34 PM

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Yes I was lucky. I went into the hospital on May 15 2005. I had  lymph nodes the size of baseballs on each side of my neck. They took a biopsy of my right side of my neck but failed to give results. My wbc went from 70's to 80's to all the way up to 118.  I was on a  ventilator.  Being chocked to death went from 205lbs to 145lbs within a couple of months . My Dr. Said it might be lymphoma.  But wasn' sure . About on 24th of May my Dr. Came and told me of a pill called gleevec. and how it worked for cml but wasn' sure if it was cml. I decided  to take itf and the next day my who's fell down to 87. Then 64 then 32 and all the way down to 6.7  I walked out the hospital on june 1st pretty much normal all my lymph nodes went to normal. I took another biopsy and went back to the hospital and they diagnosed me with cml pdgfrd gene. We were amazed. How lucky was that. I live a normal life. I went back to work events and living life to the fullest. 13 years later I'm still here .1 tablet a day is all I take I'm in complete remission with no side effects. I live life as it' my first day. Little things I took for granted.  I appreciate now. 

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