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Dr. Greenberg is superb. I also have perfect confidence in his associate Dr. Jason Gotlib. Also in Stanford’s hematology is Dr. Coutre, a long recognized expert, and likely about 10 more junior doctors.

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I have had trouble getting any of 3 doctors to define the alcohol issue. I would say: 1) binge drinking is bad, drink very little 2) red wine is good for HDL and thus cardiovascular health 3) I stop at 1 beer 4)alcohol goes into the blood stream quickly but also into the bone marrow. PS I also stop at 1 small glass of red.
Deep down, I sense that my doctors would prefer very little or no alcohol. Of course they also decline to comment on diet and naturepathic remedies or amelioratives, based on the lack of scientific evidence.
Good luck and learn to enjoy moderation.

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Jerry, I have had low platelets for 15 years, ITP DGS until CMML DGS 2 years ago.
1)I line my right nostril with Vaseine every night (no exceptions). My septum is not straight, so left nostril nosebleeds are rare. 2) My hematologist has taken all anti-inflammatories and also Pletal (a MED for reduced blood flow to legs) out of my regime. 3) The backs of my wrists would get torn and bleed with modest bumps or abrasions. I use moisturizing lotion on my wrists; the softer skin seems more abrasion tolerant. I have not yet tried Urgent QR or Nosebleed QR, but I tend to travel with Kleenex or paper napkins to stop the bleeding when it occurs.
At any rate, I have been bleeding far less with platelets 50-60 than 2 years ago with platelets 80. Ibuprofen was quoted to me as reducing platelet effect by above 10 for a week.
No other MEDs; minimal symptons to date.

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Yes. Charles Black was a utilities executive, I believe also a diplomat (as was Shirley), married a long time (50+ years, if I recall). Local obit stated a 3 year battle with MDS. This and Rep. Bob Matsui’s death early this year to MDS should get Northern California attention.

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Simple thoughts standing back.
After my divorce in ’90, my first girl friend in ’92-3 was a healer, active in mind-body, Noetic Sciences reviewer, also went through breast cancer. We had many spirited discussions, especially as I was and am a sceptic re “healing”.
The Bible says “give unto Caesar that which is Caesar’s and unto God that which is God’s”. I believe that there are health problems which are measurable, defined, best treated by doctors, etc., and others for which alternative methods may work. In MDS there are CBC’s, bone marrow biopsies, etc. This seems to indicate for me that the non-alternative treatments by doctors and by the widening array of medications are the best way to go.
My local support group tells me that bone marrow diseases act unpredictably, with surprises good and bad. I suspect that some of the cures by diet or by prayer are coincidental. I haven’t seen any hard evidence by controlled experimentation re effect of diet, and would like to see some.
The large amount of medical research listed in the MDS-F periodicals shows that the healthcare industry is investing in the curing of bone marrow disease; other cancers are being similarly attacked and progress is made. The ACS is constructive. Doctors are in it to heal.
At issue is the need for profits by big Pharma. Revlimid, Zarnestra, the leukemia treating successor to the Roche/Affymetrix Amplichip (P540 chip), etc., all need to provide some financial return. This is where the debate should be, not questioning the motives of ACS.

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Kerry,
Have faith and keep hoping!!
Peter Greenberg at Stanford is a recognized expert in this field, and a caring person; I also have high confidence in his associate director, Dr. Gotlib. Stanford did the bone marrow biopsy for my hematologist.
There is a local MDS support group, next meeting Sun Aug 14, 2 PM in Oakland. If talking is easier English communication than writing, this may be of interest. We will discuss what we learn at the AAMDSI meeting in Denver.
For me, Vidaza is a suggested future MED. Many have transfusions, with some MEDs to counter iron buildup. Thalidomide has been mentioned in this forum and in my group. I believe that Revlimid has a close relationship to Thalidomide, and was expected to alleviate and defer symptoms as Thalidomide sometimes does; as a surprise bonus a small percent had remission as well after the Revlimid. Many other MEDs are in research.
It took me over a year to get over shock and inertia and to start learning the terms and lore.
Our group leader had CMML DGS in 1996, was given a limited life expectancy in ’97. In 2005, he is trying to get his blood counts adjusted to pass his flight physical and keep on flying. An inspiration.

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Call me Perplexed New Kid, DGS CMML 1/2004. Just now starting to understand terms. At local support group was told that red grapes and red wine were beneficial. Drs. Oz and Roizen “You, a user’s manual” interviewed, recommended 1-2 glasses of red per day for men, 1/2 that for women. At least this should help HDL’s, and I doubt many MDS patients can exercize enough. Another recent posting by CMML patient also recomended red grapes, if I recall. My hematologist took me off vitamin E. The red fruit, berries or grapes, seems consistent and are natural anti-oxidants. About the recent black sesame seeds/juiced pineapple to help PLTs, is there a reference? My PLTs bounce around about a negative trend line. But, my bleeding is much reduced at lower PLTs as anti-inflammatories and other MEDS have been purged from my system and a couple of anti-bleeding precautions (Vaseline daily in nostrils, e. g.) have helped.
Daily berries seems right.

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