Atypical CML / MPN

Hi, I was diagnosed with Atypical Chronic Myeloid Leukemia (aCML) in September 2016 (WBC 37,000 on 8/23/16) - classed as an MPN. ("Looks" like CML, but no Philadelphia chromosome.) High neutrophils, thrombocytopenia (platelets have drifted down from roughly 130-140 in Sept. to 96 and a few 80's in April-May 2017), mild anemia (marginally low hemoglobin, hematocrit). Apparently quite rare, so hard to find research on or other patients, but hope to find patients or information here. Night sweats (actually, for over 10 yrs. PCP was negligent/lazy about investigating thoroughly, despite my repeated complaints); somr torso itching; some weight loss (172 down to 162); now some mild spleen pain since about 3 weeks (as of 5/17/17). WBC has fluctuated between low 30's and mid 50's (57 was following 2 week course of supplements from naturopath: agaricus blazei, vascustatin, curcumin, vit. C, green tea pills, ddan shen, andrographis, vit. D. Supplements only made blood work worse. WBC and neutrophils increased (neuts to 90%), platelets a bit better, to 126, but scary result over all. High doses of all supplements (e.g. 36 pills of agaricus, etc.) Watching/waiting under heme/oncologist supervision every 6-8 weeks. On deck fot possible stem cell transplant (but acml so rare, no 10/10 matches in 10million+ donor national database; and very hesitant about transplant, and heme/onc conservative about proceding to. Realistic about graft-vs-host reaction and risk/continuing pain, as well as initial mortality risk from initial heavy chemo. Age 69yrs+9mos.

4 Replies

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  • I was diagnosed with CML in 2000. I have no Philadelphia chromosome, just the cryptic translocation of DNA from chromosome 22 to 9. No match for a transplant. Night sweats lasted about 2 years. Started taking imatinib in 2001 and have been well ever since.

  • Gosh I can't believe there are two people and the wife of a patient on here! I never ever got to contact anyone for my husband apart from medical people. Most if them were excellent. One was diabolical. Good luck to you. Are you in UK or other country?

  • My husband was diagnosed with the same thing in late 2013. After he was given hydroxyurea we asked after about 11 months for a second opinion. He was then put on Jakavi. He was told he was a guinea pig as they hadn't used it forbthis condition before. Apparently it is so rare a doctor can go their entire career and never see a case. There can be severe side effects with Jakavi in some cases. My husband died in February of a rare neurodegenerative disease but there was concern at one stage it might be the side effects of Jakavi.

    I have seen a lot of positive comments about Imatnib also about Jakavi but you need to read up on the severe side effects rather than the normal nausea and so on.

    What medication are you on now and where do you live?

    I managed to get to talk to someone about where he should go for a second opinion and what doctor he should see.

    Like you we couldn't find people who had this condition.

    You need to get the best advice out there.

    Good luck to you and if I can help please contact me.

  • Thank you all for responses. Sorry for delay (lost my password, as usual). I am not in treatment yet - been watching and waiting. Hydroxurea would be first symptom (palliative) treatment; then stem cell transplant if progression accelerates. Been trying everything I can to find any legitimate natural foods/herbs/supplements that might actually limit or retard progression. So much of this stuff seems really questionable and seems to do nothing, but still hoping and trying, with accompanying skepticism, as I would like to find anything other then chemo before having to go to that. If anyone has had any genuine success with anything, I would appreciate knowing about it. I am not in UK; in Boston, MA. Major hospitals have confirmed aCML as most likely diagnosis.