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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  • in reply to: MDS to AML question ?? #49774
    Glen Sakamura
    Participant

    I tried putting up two responses and do not see them here. Send me a private email. I am a patient with MDS/MPN and Sweet Syndrome. I can share to you what my HEMONC, not PCP is doing for me. For the last year. glenmsak@yahoo.com

    in reply to: Vidaza injection site discomfort, HELP🙀 #49773
    Glen Sakamura
    Participant

    Found out that it is a mix that they do in the Pharmacy. When it gets there it is kinda thick. When I was getting shots, the infusion center and I finally found out that if it goes in thinner, it didn’t hurt as much. What they would do is roll it in their hand to mix it and make it thinner, then the application would be a little faster than a regular shot. I have had 2 shots a day for 5 times a week, and my tummy has had over close to a 100 shots. Because my treatment will remain long term I opted to get a chest port (bioflo). I get my transfusions and Vidaza through it including blood draws. Diagnosis MDS/MPN overlap Unclassifiable, and Sweet Syndrome, Sep 2018. Bottom line, I know it hurts but I also gave you my ultimate option of having a port. I tried it once through my arm veins and could see they were collapsing after my treatments. This is me, hope it helps.

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