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I'm tired of this.

Home forums Patient Message Board I'm tired of this.

This topic contains 1 reply, has 2 voices, and was last updated by  Sherry Pratt 2 years, 9 months ago.

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  • #30862

    rft1111
    Participant

    In January of this year, I was diagnosed with MDS-RCMD. Blood counts were low before that for a year, maybe two, but overlooked and blamed on “old age” and low on iron even though no one checked for iron-deficiency at the time. I should have done a lot more questioning than I did at the time. That’s history. Now is now, although I wonder if I would have the same problems if MDS were diagnosed earlier.

    I am 64. The first thing done after a bone marrow biopsy was to put me on Aranesp. I had 14 weekly injections of that and nothing seemed to improve, just get worse. Next in line was 6 cycles of Vidaza. That hasn’t show any signs of improvement. After the 6th cycle, the Dr. did another bone marrow biopsy. The biopsy was a failure. No good marrow and clotted samples is the best the Dr. could get. He did say that I do not have leukemia. He is now putting me on Revlimid. I will start that as soon as the pills show up in the mail. How effective is this drug? I’m sure that what works for one person may not help another. If there is any hope for Revlimid, how long before results show up?

    I’ve been averaging about a transfusion every other week since December. There was one hopeful stretch when I went about 9 weeks without one and other periods where I received a transfusion 3 weeks in a row. I get another one tomorrow. This time, my Hgb is at 5.8, the lowest yet. I don’t feel it as being that low. The way I feel it should have been in the upper 6’s. It was 7.4 7 days ago.

    Is there hope for me and Revlimid? Next comes clinical trials and maybe stem-cell transplant. Any talk of a transplant has been put off so far since the Dr. thinks I am in not the best shape for one … heart issues in the past and obesity. He isn’t sure that I would survive a transplant. I am thinking of getting a 2nd opinion on all this, but will give the Revlimid a chance first.

    • This topic was modified 2 years, 9 months ago by  .
    #30866

    Sherry Pratt
    Participant

    I took Revlimid and it did not help me but it may help you. I would call the Cancer Treatment Center of America in Chicago where they specialize in stem cell transplants. I am here now for mine. This place is awesome. You can call and get a second opinion and just see if they can help you.

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