CMML Leukemia

4 Posts | Page(s): 1 

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

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