Author Topic: Anti-tumor drugs, limited discussion?  (Read 3884 times)

paul007ex

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Anti-tumor drugs, limited discussion?
« on: November 04, 2016, 09:51:42 am »
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



arizonajack

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Re: Anti-tumor drugs, limited discussion?
« Reply #1 on: November 04, 2016, 11:30:25 pm »
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.

3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

Willbur

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Re: Anti-tumor drugs, limited discussion?
« Reply #2 on: November 05, 2016, 06:59:19 am »
I'm currently doing immunotherapy. I was told this is the answer.
Diagnosed@29
10/13/16 - 21x23x19
1/16/17 - 22x23x19
1/24 - Surgery Successful
3/6 - MRI/CT Scan No Regrowth

ANGuy

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Re: Anti-tumor drugs, limited discussion?
« Reply #3 on: November 05, 2016, 09:27:16 am »
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.
Diagnosed June 2014 1cm AN at 47 years of age.  Had fluctuating symptoms since 2006.    6 mos MRI (Dec 2014) showed no growth, MRI  in July 2015 showed no growth.  MRI Jan 2016 showed no growth.  MRI Aug 2016 showed no growth.  I'm gonna ride the WW train as long as I can.

Sheba

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Re: Anti-tumor drugs, limited discussion?
« Reply #4 on: November 05, 2016, 05:16:40 pm »
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?
Diagnosed 4/2016 1.4cm AN.  Mild hearing loss and tinnitus.
Removed 7/2016 at Keck, Drs. Freidman and Giannotta, Retrosig approach.  Lost hearing in AN ear, but no other negative outcomes.  Will investigate bone anchored hearing devices.

PaulW

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Re: Anti-tumor drugs, limited discussion?
« Reply #5 on: November 05, 2016, 08:02:27 pm »
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
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

PaulW

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Re: Anti-tumor drugs, limited discussion?
« Reply #6 on: November 05, 2016, 08:03:56 pm »
There are a myriad of Avastin like drugs being tested for NF2
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

Willbur

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Re: Anti-tumor drugs, limited discussion?
« Reply #7 on: November 06, 2016, 07:35:33 pm »
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.
Diagnosed@29
10/13/16 - 21x23x19
1/16/17 - 22x23x19
1/24 - Surgery Successful
3/6 - MRI/CT Scan No Regrowth