Fight MPN

Atypical CML / MPN

Hi, (Age 69 yrs + 9 mos now) 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.