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Old Tue Oct 25, 2016, 10:34 AM
Bananamoore Bananamoore is offline
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Join Date: Jun 2016
Location: Chicago
Posts: 15
Thank you everyone for getting back to me! I'm realizing this is more of an art than a science. We did end up transfusing, she was 5.7 Hg, but was still feverish for about four days afterwards. The highest her fever got was 100.2°F. We ended up going into the emergency to see if this was a long standing infection, but we ended up checking out and just seeing her regular doctor. He took blood and we should get the results today, but when I last checked her results I did see that her platelets and white blood count is lower, this is the lowest her platelets have been I think since I've started tracking them, 130, which I know is still quite good, but they plummeted by about 150 in a week. It's good to know that the fever probably lowered them, but I am concerned if perhaps she also has a new mutation. She does feel better now, we will see what the blood results say today or tomorrow, when I spoke with the doctor about Revlimid he was hesitant since her white count are already so low, plus she is hypo-cellular, but said we can try at a low dose, 2.5 mg. Is that enough to even be effective? I'm also starting to consider doing iron chelation, she must be at about 1400 at this point.
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Anna, daughter of Raisa age 63; dx MDS 5q- Jan 2013; receiving transfusions, no other treatment, white and platelets stable but Hg dropping; p53 mutation; started taking Revlimid Jan 2017 5mg every other day, Hg went up but since June 2018 has been steadily decreasing
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