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Author Topic: Mifpristone - has any one tried this  (Read 3883 times)

mwatto

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Mifpristone - has any one tried this
« on: January 10, 2019, 02:44:34 am »
Hi all new here diagnosed yesterday. I read this and wondered if anyone has tried it? I live in Perth Australia. I read a patients experience which was very positive (shrank her AN) https://www.masseyeandear.org/news/press-releases/2018/04/mifepristone-may-halt-growth-of-intracranial-tumor-that-causes-hearing-loss
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Michele
20 x19x14mm Cystic AN diagnosed Feb 2019. CK.
Mri 2019 shrinking: 18x17x13 mm.
Mri 2020 - no cysts visible stable.
MRI 2021 stable no change
MRI 2022 stable no change.
MRI 2023 Further reduction 12x12x10mm!! Hearing 85%
MRI 2024: No change AN or hearing

mac84

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Re: Mifpristone - has any one tried this
« Reply #1 on: January 10, 2019, 07:54:58 am »
I'd try it! Interesting article and something we should ask our provider's about.  Will be interested to see if anyone else on here has asked about it.
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Diagnosed 10/13/14 with 1.4cm AN L side
1st Consult with Vanderbilt 11//14
W/W.  Next MRI in April 2015 at Vanderbilt.
April 2015 MRI no growth -
April 2016 MRI no growth - still 1.46cm.
4/17: No growth!
4/18: No growth! MRI 2 yrs
4/20: No growth! Symptoms stable- MRI 2 yrs

notaclone13

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Re: Mifpristone - has any one tried this
« Reply #2 on: January 10, 2019, 10:47:56 am »
Welcome mwatto, sorry about your diagnosis.  You will learn a lot about this condition from this site. Where did you learn about the AN patient taking mifepristone? Was it someone in Australia? Could you share the source of your information?
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Freelander

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Re: Mifpristone - has any one tried this
« Reply #3 on: January 11, 2019, 01:54:19 pm »
This ANA site is undoubtedly the best place to focus after learning you need to cope with AN.  We are fortunate to have it.

Regarding mifepristone for AN, I recently talked with Dr. Stankovic at the last Boston ANA Support Group meeting,  who said that the effort to attract funding for a clinical
trial to test the effectiveness and safety of the drug for acoustic neuroma is ongoing.   Of course, those of us in watch and wait wish it were already done.
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Freelander

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  • Posts: 62
Re: Mifpristone - has any one tried this
« Reply #4 on: January 14, 2019, 08:37:20 am »
You can find the following new video presentation:
Therapeutic Potential of Mifepristone for Patients with Vestibular Schwannomas

in the ANA Video Library

https://www.anausa.org/programs/support-groups/video-library
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