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Dan, thank you for the reply! Yes, that does give us things to ask the doc next time. You're right about the Revlimid being mostly effective on 5q-, but mom also has the p53 mutation, which her doc said does not do as well on that med. He was not pushing at it first, then kind of changed his mind and says we may as well try it. So we're thinking about maybe starting off at 5mg and see how that goes, keeping the immunosuppressants in mind.
Mom also has a *really* hard time with bone marrow taps, it's just beyond painful and the numbing meds have almost no effect on her. The last person who did it literally broke into a sweat after chiseling, she said after that mom's bones are unusually hard for someone her age (62). I wonder if that is at all tied in with the hypocellular element? Or the two are just separate?
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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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