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 6 posts - 1 through 6 (of 6 total)
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  • in reply to: Platelet transfusion #58900
    Bonnie Shaffer
    Participant

    Hi Carol,

    I did not get my surgery. They offered to try again with better matched platelets, but I declined.

    They did not really know what caused the reaction and I didn’t want to go through that again.

    I am doing contrast breast MRIs every 6 months.

    So sorry you are dealing with this.

    Sending good thoughts.

    in reply to: Platelet transfusion #58893
    Bonnie Shaffer
    Participant

    Hi Carol,
    I had a failed platelet transfusion while I was being prepared for a preventative double mastectomy due to having the BRCA1 gene.

    All hell broke loose about 9 minutes into the transfusion. My blood pressure went from 144/75 to 60/30 in minutes. I threw up, had a bowel movement, my temperature spiked and I itched all over. The surgery was cancelled due to the severe allergic reaction.

    The Doctor mentioned that she had given my B+ platelets (I’m O negative) and that some red blood cells might have gotten into the platelets.

    I did some research and found that up to 30% of people have a reaction to a platelet transfusion.

    I would urge your Dr. to match the platelets to your blood type, even though normally platelets do not need to match your blood type.

    Best of luck to you and I hope everything goes well!

    in reply to: Bruisng #58792
    Bonnie Shaffer
    Participant

    I used to have a lot of bruises. And they would last a long time. It was one of the symptoms that lead to my MDS diagnosis.

    I actually had a hematoma the size of a quarter in my bicep and a huge bruise from winding a ball of yarn! I’m 61.

    My Hematologist said these things are going to happen.

    Now my platelets are slightly high and I am not bruising so much.

    What a rollercoaster!

    in reply to: Anniversary of diagnosis #58767
    Bonnie Shaffer
    Participant

    Congratulations! That’s wonderful!

    in reply to: Mutations #58322
    Bonnie Shaffer
    Participant

    Hi Siobhan,

    That’s an interesting question. I also noted that TET2 was not included. My hematologist mentioned that they were working on which mutations to include in the calculator so maybe they found that these were not significant mutations? Not sure but very interested.

    Bonnie Shaffer
    Participant

    I have very low risk MDS and my doctor scheduled an appointment for me immediately. Got my 3rd Pfizer shot on Monday.

Viewing 6 posts - 1 through 6 (of 6 total)

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