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greg
MemberJack: I think this is old jargon. CMML has been defined as its own disease now, with some myelodysplastic qualities. They use the wrong wrong in saying “progression.” CMML can appear first or later, be slow or fast, etc.
MemberDear Harold et al:
Her monocytes have always run well above normal, but bm blasts are still normal 2.5 years after diagnosis. The monocytes in the lung fluid came about after mild pneumonia after gall bladder surgery in late January. Good to hear about the Vidaza: have you been on a regular dose (ie, 7 days on, 21 off) for over two years now or did they reduce your dose after a while?MemberThanks for all that. My mother’s joints are swollen as all hell and they just found some cmml cells in her lungs. Her monocyte % has always been pretty high but she still has no blasts in marrow or bloodstream. Incomprehensible as I always thought blasts measured the disease. She starts Vidaza tomorrow to try to calm down the crazy monocytes. Any similiar experiences/treatments? thanks, greg j
Memberactually it looks like it will be approved early in 2006. supposedly a bit milder, and possibly a bit more effective, than vidaza. google it, and you’ll find some business stories from this month about the fda requesting more info. greg j
MemberJimbob: Hello, Greg here. Could you detail again your dietary recommendations? i know you did it a while ago, but I’ve lost track. Again, my mom has cmml, low platelets, and we’re particularly seeking platelet stimulators. I think you said pineapple once. Thanks, Greg
Memberalso, wondering if any of you had any tricks for increasing platelets. jimbob? thought you said noni pills or pineapple juice once/? thanks, greg
MemberHi, all cmmlers. It seems decitabine, a relative of vidaza, may do even better for all of you. I’ll post a trial result in the am. My mom’s doc said wait for decitabine, as did a doc at md anderson. peace, greg
MemberAnthony: My mother has cmml, and most cmmler’s are older on this site. You should check the Hutchinson hospital cancer and transplant site, as the are the real trailblazers in bmt. best luck, greg j
MemberHi, Jack. We saw Dr. List with my mom (CMML), and the only thing you should consider is that he indicated it is better to start Vidaza before things deteriorate too far. IE, better to start it too early than too late. He said is seems to be particularly effective for CMML. We’re starting to cosider it. Greg J
MemberJack et al: I want to make clear that Dr. List stated that Vidaza is working better for CMML than most other types. It seems each institution has its drug preference, so I’m sure you’ll be careful with what MDA advises. Good luck down there and let me know their assessment.
Best, GregMemberJody: My mom was diagnosed in Sept. 03 with “indolent” cmml. All her counts were normal except the neutrophils below 1000. Now the neutrophils are back up, but platelets are in the 80s. Low blasts, no chromosome abnormalities. Dr List’s point is if you start vidaza early, it can alter the genetics of the disease, I think. So if blast counts are trending upward but still low, Vidaza should be considered.
I’ve done a lot of research and there does seem to be a very wide range of cmml treatments and prognosis. The stuff about 1-2 years is misleading. The Dusseldorf group points to about 6% of patients who live something like 150 months with only transfusions. The key seems to be the total wbc count to determine if you are more mds or myeloproliferative. Blasts, of course, are the bitter enemy, too.Does your mom have any bone pain, particularly at night?
List also said autoimmune disorders, like arthritis and skin problems, are more common with CMML.
Look forward to hearing from you. Greg J
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