ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: Freelander on April 16, 2018, 09:47:01 am
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FYI:
https://www.masseyeandear.org/news/press-releases/2018/04/mifepristone-may-halt-growth-of-intracranial-tumor-that-causes-hearing-loss
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It would be fantastic if this drug actually works but it may be some time before clinical trials can be conducted. The good thing is that this drug has already been studied and approved for use in humans, which should speed up the process quite a bit. In addition, if the results of the trial look promising, they can ask the FDA to “fast track” the drug for use in AN treatment.
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Hi There - old "wait and watch" member here. Been at it since November of 2001. I've printed out this wonderful article as I will be going to my neuro-oncologist in Boston in a few weeks. He's at Dana Farber and also into research affiliated with MGH (Partners Org.). I'll report back anything significant.
Sheryl
p.s. Derek, glad to see you are still trying to catch me!!!
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Hi There - old "wait and watch" member here. Been at it since November of 2001. I've printed out this wonderful article as I will be going to my neuro-oncologist in Boston in a few weeks. He's at Dana Farber and also into research affiliated with MGH (Partners Org.). I'll report back anything significant.
Sheryl
p.s. Derek, glad to see you are still trying to catch me!!!
Hi Sheryl...
I'm still tagging along behind you as usual....can't believe we are into our 17th year since diagnosis! Hope all is well with you and hubby.
Best Regards
Derek
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Hi Sheryl and Derek, both of you have been watch and wait a LONG time. I have a 1.2 cm AN with symptoms but they are manageable - just diagnosed about a month ago. Would love to know any tips on how you have managed the AN. Derek I see you said self treat so just wondering what you did. I could live just fine with mine, I am happy, I exercise, I'm not worried about it, etc. I am 50 and just don't want it to grow and need treatment into late 50s or 60s. Any advice you have would be greatly appreciated! Sincerely. Kimberly
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Hi Kimberly...
If you refer to the 'sticky' thread 'Top Tips For The Watch & Wait Brigade' you will find all of my antecedents following my diagnosis in 2002. In brief I have merely adopted a healthy lifestyle and diet including plenty of fresh fruit and veg, oily fish, 2 litres of water each day and a marked reduction in processed foods, alcohol and refined sugar intake plus a daily moderate exercise regime including a brisk 5 miles walk. I also have a consultant whose advise I trust implicitly and have regular MRI scans currently biennially since 2015. I must also factor in my mind-set that I would be in control of my situation rather that the AN panicking me into making uninformed decisions. Thorough research is a fundamental MUST for those newly diagnosed. It may well be the case that I have just been fortunate enough to have been extremely lucky in having a reduction in the size of my tumour over the ensuing years but the good diet and exercise have certainly improved my general health to the extent that I am fitter now at 74 than I was when originally diagnosed at 57 so it doesn't get better than that!
Best Regards
Derek
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Hi Kimberly - Derek's info and the info on the original thread is very helpful. I wish you a long time on W&W but if things change and you start experiencing growth and more symptoms, doing something while you are still in good health is always a good idea. It's a good time to check out your options, although new treatments (hopefully this pill) are always coming along.
Keep us posted,
Sheryl
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Thank you so much Derek and Sheryl! I will read up on these threads. Kimberly
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Hey, that's REALLY interesting, thanks so much. Going to check it out.