MDS is a bone marrow failure disorder
MDS is a blood cancer
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Welcome to the MDS Patient Message Board. We hope that you will find this to be a very valuable resource in your journey. We have recently revised the format of our forum to be much more user friendly and pleasing on the eyes. Let us know if you have any problems, or if you have additional suggestions on how we might further improve our site.

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Viewing 3 posts - 1 through 3 (of 3 total)
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  • in reply to: Starting my 62nd Cycle of Vidaza #57124
    Michele Polland
    Participant

    62 rounds, wow!

    Just preparing for my 8th round of Dacogen (started off with Vidaza). Almost from the beginning I’ve had a serious, debilitating problem with itching (no rash just itching that makes my body feel on fire). Just wondering if any of you experienced such a reaction. My bloodwork is improving so I suppose it’s working. Benadryl and Pepcid did not help at all. Prednisone helped to some extent last month but I’m dreading my next round. Any suggestions? Thanks all!

    in reply to: Azacitidine #54914
    Michele Polland
    Participant

    Hi Lee, I was diagnosed in February 2021 with blasts at 6%. In April I had a heart procedure and my hematologist wanted to wait until after the procedure to begin Azacitidine (Vidaza). I began in June and have completed 3 rounds of 7 treatments out of each 28 days. Low platelets are my biggest issue but my hemoglobin and red blood cells are also low. I haven’t experienced any major side effects. One minor effect is itching on occasion. Fortunately, a nurse at the cancer center convinced my doctor to administer the Vidaza via infusion versus a shot in my stomach. I recently had a port implanted to receive the infusion. I believe this is a much better approach. I start round 4 on Tuesday. So far my numbers are dropping which is typical with Vidaza until round 6, 7, or 8, as I understand it. I’m 70 and retired so I receive my infusions in the mornings. I feel fine the rest of the day.
    I’m not a candidate for a transplant so I’m hopeful this treatment works for me. MDS is a scary disease.
    I wish you good luck!

    in reply to: questions about new q5 detetion diagnosis #54625
    Michele Polland
    Participant

    I have the 5q Deletion (also MDS with excess blasts-1). My platelets stayed in the 70 range for several years and has now dropped to the 35-45 range. Yes, MDS causes tiredness.

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