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I guess I better introduce myself….

Home Demo forums Patient Message Board I guess I better introduce myself….

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    I have posted here, but not actually told anyone of our story, I’ll try to make it short. smile Dave was diagnosed back in Jan. of 2001 of non-hodgkins lymphoma, follicular, b-cell. He did the CHOP with really no results, then did CHOP with Rituxan, THEN did DHAP. There were small results, but then they moved to Zevalin and that took a lot out of him. Shortly after the treatment of Zevalin Dave took a trip to Mexico and there he received different treatments along with chemo and radiation. He then went into remission (also taking Prednisone every other day)and still taking every other day. He went into remission (smoldering stage). His platelets were really low and then he had his spleen removed in June of this year. Seemed to have brought up the platelets, but noticed slight anemia. Had a check up in Nov. and a BMB, showed Hgb- 7.8, RBC at 2.38 WBC at 82, platelets were 172. They first thought his kidney’s might be the problem, but they weren’t. They had chromosome tests out which revealed deletion of 13 and Y chromosome, the rest I did not fully understand yet. He said more, but didn’t understand. We are to have his counts checked every month, until his next appt with Mayo in Feb, which then he will have another BMB. We were told he didn’t know if he could get a BMT, they feared he wouldn’t make it through it and because of his underlying NHL. Dr. feels this is MDS and needs more time to make the diagnosis. Ive done searches at Mayo and noticed his doc has done a lot of research and treatment of MDS patients. Not too long ago he ran a fever and his white count was up to 117,000, but started him on antibiotics and now feels better. Not sure what his WBC is now after the antibiotics, but he feels much better. I guess I wish we knew for sure what was going on so I knew what kind of MDS they think he has. Dave does take barley green, vitamin C, and other vitamins now, which I think helps. But I wanted to check if there was something out there (vitamin wise) that would make him feel a little more energetic. He has possible secondary MDS and there aren’t a lot of sites out there that give’s info. But recently got some and doing to major reading. Dave is 44 and I’m 42, we have 4 boys ages 21, 19, 14 and 11. smile



    Hi Barb, Bob is 59 and was dx with MDS in Aug of 03. I do believe all of the vitamins and supplements in conjunction with the Regular meds the Hemotologist has him on does help.
    He is currently undergoing Vidaza treatments.
    Counts are hanging in there.

    I am sure Neil will send you questions to ask the doctor he is so much help.

    Prayers are with you.

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