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Old Sat Jan 16, 2016, 10:14 PM
Maura R Maura R is offline
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Join Date: Aug 2015
Location: Hyde Park, NY
Posts: 20
Mom diagnosed with MDS

I haven't posted in quite awhile about my mom's diagnosis, but I'm having some concerns again.
My mom was getting platelet transfusions every other week and then they started steriods with her treatments. She received 2 transfusions with the steriods, but they were discontinued because my mom had an awlful reaction to them. She was pretty much bed ridden for 2 days afterwards. The funny thing though, after her last transfusion with the steriod, it kept her platelet levels at bay. She hasn't had a transfusion in over 11 weeks. Her levels keep bouncing up and down, which we don't understand. Has anyone experienced this?

She just had an appointment this past Tuesday, her platelet count was at 21, which went up from 16 (doctor only tranfuses when below 15) and the doctor wanted to transfuse due to my mom's bruising and her gums bleeding. After this transfusion, she has felt awful. Extremely tired and very weak, pretty much the feeling she had with the steriods.

My question is, Is this from the MDS itself, is she having a reaction to the platelets? I know that the platelet levels being low makes you tired, but it just seems so much worse lately, and not really getting any real answers from the doctors as if the disease has progressed or not.

Just looking for some honest feedback.
Thanks so much
Maura R

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Mom DX with MDS RAEB 2 with blasts @15 to 18%...just monitoring blood work and transfusions when needed
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