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MDS Myelodysplastic syndromes

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Old Thu Jan 24, 2019, 06:44 PM
Bananamoore Bananamoore is offline
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5q- (deletion), when Revlimid stops working

Hi,
Mom was diagnosed with 5q- in 2013, had transfusions then went on Revlimid in early 2017. It worked for a while, now her counts are trending down every month. Her doctor is an old bag who is fine letting her Hg drop to 6 and then transfuse. I know we need to find a new one, but in the meantime I am feeling lost about the next step. I know that my mom had some percentage of p53 found, but at that time it was low. She is otherwise in healthy condition, all things considered.
We are in Chicagoland area, we met with University of Chicago doctors about transplant a few years ago, but not sure about the team. I am looking for anyone who has information or experience about what happens to 5q- patients after Revlimid.
Thanks very much
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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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Old Fri Jan 25, 2019, 06:46 AM
Pearl Pearl is offline
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Quote:
Originally Posted by Bananamoore View Post
Hi,
Mom was diagnosed with 5q- in 2013, had transfusions then went on Revlimid in early 2017. It worked for a while, now her counts are trending down every month. Her doctor is an old bag who is fine letting her Hg drop to 6 and then transfuse. I know we need to find a new one, but in the meantime I am feeling lost about the next step. I know that my mom had some percentage of p53 found, but at that time it was low. She is otherwise in healthy condition, all things considered.
We are in Chicagoland area, we met with University of Chicago doctors about transplant a few years ago, but not sure about the team. I am looking for anyone who has information or experience about what happens to 5q- patients after Revlimid.
Thanks very much
I believe the University of Chicago is an MDS Center of Excellence. You may want to head right there for an opinion.

https://www.uchicagomedicine.org/
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