Any With A CMML1 Diagnosis?
Reply to Edward3 I was diagnosed with CMML-0 in April 2223. Initially I lost 20 pounds and currently have occasional night sweats and a slight loss of appetite, no other symptoms. I take periodic blood tests but have not yet required any treatment.
Good to hear from others with the diagnosis of CMML and that “MCM” feels the treatment is starting to work.
My weight has dropped about 20 pounds but seems to be holding.
I have weekly blood tests that vary slightly, but only once have I had to postpone my CHEMO treatment. I am on a monthly regimen of several days of Inqovi then a three week break.
Prayers of support to all.
EVS, South Carolina
I have had CMML1 for 5 years. Low "blasts". Big problem with platelet counts, often below 20 sometimes below 10. Getting transfusions almost 3 to 4 times per week. Started a combination of decitobine and Venklexta once per week to try to jump start platelets and stabilize blood levels. I think it is starting to work.
Hi Dawn, I was diagnosed with CMML-1 in May of 2023. If I’m reading any of it right I had 4% blasts in bone marrow with mutations SRSF2, DNMT3A and three TET2. Low platelets and high monocytes. Began 5 day every four weeks decitabine treatments the end of July which continued till end of October. During this time platelets dropped into the low teens and I had five or six platelet transfusions. Bone marrow biopsy in November showed less than 1% blasts same mutations. Platelets averaging higher (80s) and monocytes reduced. In December began 4 days of decitabine every four weeks. Was at my lowest point both mentally and physically in early November. Cancer, Chemo, some sort of flu and shingles (previous vaccine helped). Lots of good days lately, some pretty rotten ones too. Still fighting.
I am in the same situation as you diagnosed with CMML1 last June 23. I too at first lost 30 lbs in about 1 month and had night sweats, Recently my weight has somewhat stabilized. I'm also on the wait and see blood testing regiment. Other than tiring easily and swelling in my arms hips and legs ( which is being treated with Prednisone.) I only have a rash on my arms. My latest blood tests showed the blood count levels staying about the same. So no treatments for me either.
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