[Jerry]

Jim ….

Thank you … I just spoke with Elizabeth and signed up for the Cleveland meeting … As an added note, this will be a pretty easy meeting … Lunch at 1:00pm followed by a brief presentation by the Dr. and then a question and answer period .. All will end by 4:00pm. Thanks again for the “heads up”.

[Jerry]

Thank you all … I guess I feel so feisty today because my hemoglobin was up to 12 !!!! That is the highest is has been in a long time. Neil, thanks for the dental advice … I do it all pretty religiously except for the flossing part. Gonna have to work on that. I am still trying to figure out how to find a competant nutritionist. I am a bit afraid of finding someone who has no clue as to what I need. Hope you all have a great week.

[Jerry]

Debbie gives me mine in the arm … you MUST let the Procrit warm to room temp before injecting it … it does not hurt so much that way ..

[Jerry]

Hi Lynn ….

I take 3 20K Prokrit shots a week and my hemoglobin is holding near 11. It has been as low as 7 at one time and 9 another. So, for me, it seems to be working. I have never heard of any negative side effects, so maybe it would not hurt you to try it. It takes about a month for you to realize any benefits from it. Good luck.

[Jerry]

Sandy … call Patient Liaison: Audrey Hassan • Patientliaison@devmdsfound.org.php53-13.dfw1-2.websitetestlink.com • P.O. Box 353, Crosswicks, NJ 08515
Phone: 1-800-MDS-0839. I talked with Audrey today and she is very helpful and can refer you.

[Jerry]

Jimbob … thank you … do you have any suggestions on how to find a nutritionist with experience with MDS. My method, I suppose, would be to start calling people listed in the phone book …but, that seems frought with danger to me… ie: someone claiming experience when they don’t have it … thanks again for your suggestion …

[Jerry]

Sandy and Suzanne … Thanks again … I feel so stupid … I have a 10 page letter from the Dr. in Seattle and nowhere does he mentions any of the types that you are referring to. I do have chromosomal abnormalities in the 3rd and 11th and an internal deletion of chromosome 9 with an additional copy of chromosome 3. My White blood counts (2.1) and platelets (71,000) are very low but my hemoglobin is holding around 11 with 60K of Procrit each week. (My wife gives me 3 20K shots 3 times a week with the dullest needle she can find!) I need to learn a heck of a lot more. This forum has been very helpful to me in learning some things that I do not know.

[Jerry]

Thank you Suzanne for reminding me. They classified me as int-1 or int-2 with a feeling that I am more int-2. But, as of my last BMT, June 2005, I was showing no blasts. Beyond that, what info can I try to give you to help?

[Jerry]

Thank you all for your responses.

[Author]

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