ANA Discussion Forum
General Category => AN Issues => Topic started by: paul007ex on November 04, 2016, 09:51:42 am
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I've seen literature that there are various investigative trials for a number of medications. Has anyone been part of them, or thoughts on how one might try and join them? I'm 34 yo male w/ 1 CM unilateral neuroma on right ear. Mild hearing loss. Diagnosed in 2013 and on the "watch and pray" approach for the last 3 years which only resulted in the tumor doubling.
Anyone have any opinions, or suggestion on how to maybe seriously investigate? Avastin seems to pop up quite a bit.
https://www.ncbi.nlm.nih.gov/pubmed/21800959
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My guess is that it will be at least 5 to 10 years, maybe more, before ANs can be treated with drugs.
You can't afford to wait.
I suggest getting it taken care of while it's still small.
Small ANs respond very well to radiation.
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I'm currently doing immunotherapy. I was told this is the answer.
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I've seen literature that there are various investigative trials for a number of medications. Has anyone been part of them, or thoughts on how one might try and join them? I'm 34 yo male w/ 1 CM unilateral neuroma on right ear. Mild hearing loss. Diagnosed in 2013 and on the "watch and pray" approach for the last 3 years which only resulted in the tumor doubling.
Anyone have any opinions, or suggestion on how to maybe seriously investigate? Avastin seems to pop up quite a bit.
https://www.ncbi.nlm.nih.gov/pubmed/21800959
The only info I could find regarding Avastin was involving NF2 tumors.
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Hi - I'd heard that drugs like Avastin are currently only offered for NF2 patients and it is considered an experimental treatment (it's a cancer drug);
Avastin is supposed to kill tumors by recognizing and cutting off the irregular blood vessels that feed tumors.
@Wilbur - curious how was your doc able to put you on that therapy?
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Avastin has some very serious side effects for some people.
There are other drugs being developed that will hopefully have less side effects.
Even for NF2 while results are encouraging its not a long term solution or cure.. At the moment it's something you might be able to take to buy another 2-3 years.
Aspirin is the only drug I know of that is not experimental, slows growth for some people and is quite safe
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There are a myriad of Avastin like drugs being tested for NF2
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Hi - I'd heard that drugs like Avastin are currently only offered for NF2 patients and it is considered an experimental treatment (it's a cancer drug);
Avastin is supposed to kill tumors by recognizing and cutting off the irregular blood vessels that feed tumors.
@Wilbur - curious how was your doc able to put you on that therapy?
Not on it through my doc. My wife's aunt is a scientist in Mexico that studies tumors in humans and wanted me to start immunotherapy to shrink the tumor. If you're interested I can get you information on it.