Author Topic: Mifpristone - has any one tried this  (Read 2122 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
Michele
20 x19x14mm AN diagnosed Feb 2019. Cyberknife .
Mri Oct 2019 showed shrinking to: 18x17x13 mm.
Mri Oct 2020 - no cystic components visible now. Slight shrinking, stable.

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.
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?

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.

Freelander

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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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