Any news about neurofibromas treatment with Ethanol Injections?

hi, everybody

I joined today =)

I was reading this incredible post: http://www.inspire.com/groups/neurofibromatosis-inc/discussion/experimental -treatment-with-pure-alcohol/

I got absolutely interested, as my elder brother, with NF1, went to surgery for neurofibromas removal again. This time doctor removed 8 from face, 7 from hand, and a very big one from a toe. We were considering for him the laser for a multiple removal, of course that is expensive and no way, it's considered cosmetic, you know...

so this possibility, about "shrinking" them with injections, seemed very interesting!
I'd like to know if there are more experiences,
or more about 3Pacers and Bluevelvet, who were trying it (this topic was 2 years ago)

We live in Argentina. You are closer to researchs and results, I hope some of you know more about this.
thanks a lot

Report post

9 replies. Join the discussion

I am curious to see replies.. This is the first I have heard of this treatment too!

Report post

VERY interesting! I am hoping that I will see more information regarding this type of treatment in the future. Does it help that I drink a lot of wine, lol? Just wishful thinking, I guess ;-)

Report post

LOL@ Cammi... I'm not a big wine drinker, but would be more than willing to become one if that's all it took to help NF. If any studies are done on wine drinking being a cure for NF, count me in!!!

Report post

Thanks Cindy, you always amaze me!!! Maybe I am on to something ;-) I tend to drink white wine, but would be absolutely willing to change to red!!!!

Report post

Ok wants to try this ... To 3pacers,,,, were the injections of pure alcohol deep or subcutaneous into the neurofibroma ,, and how long did it take to shrink ,also how many ml were injected per Rx,,

Report post

Love to get more info on this as well. My little guy has trouble brewing in his neck and the surgery is pretty close to inoperable.

Report post

hehehe, well, in Argentina we have excellent wines, so the treatment, even if expensive (trying better varieties), could be possible, affordable, and possibly enjoyable not only for my brother with NF1 but for all the family xDDD

Well, let's expect for answers focused in the injections, I hope some of the people in the old post I told about in the OP, could come here and tell us =D
Meanwhile, I told to my brother. He looked at me as thinking "I'm not your lab rat, am I?" but he didn't say it.... I know I know, he's the one suffering, not me, but it 's just that I put more efforts than him looking for treatments and alternatives. =(

Report post

My daughter took the Isotonix OPC3 for a while and did not see any change nor did it seem to slow down her tumor growth. It may work for some people but it did not work for her.

The product she's taking now is Neuropathy Rx. I get it from www.neuropathysolutions.com

You can read about the Phase 1 double blind placebo trial going on with it for NF.

http://neuropathysolutions.com/nf.html

There is info on the trial and if you click on "John R's Story" at the right you can see a video of a man who had really great results with Neuropathy Rx. I has not made her tumors shrink but I do think it has slowed down the growth.

~Lynne

Report post

Meanwhile... I wanted to tell you that in the post I originally quoted, there's a mention to the JST Library, what is Japanese Sci-Tech
but the post says that only the excerpt is in English.
That's true, and the article is not available for free. But it costs less than 16 dollars....
For that money I absolutely can buy it, so I sent the order just some minutes ago. They'll send me the photocopies of the article via Air Mail, so I don't know when they'll arrive.
Then, I'll make them be translated but into Spanish, my language... anyway, if the stuff is as good I'll tell you.

The full name of the article is "Multiple Dermal Neurofibromas in Patients with Von Recklinghausen's Disease can be Treated with Direct Injection of Absolute Ethanol." The authors are: SATO NORIKO, WATANABE AKI, KUBOTA YUMIKO, NAKAYAMA JUICHIRO

we'll see.

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support the Neurofibromatosis Network

Help the Neurofibromatosis Network reach its goals and support people like yourself by making a donation today.

Donate to the Neurofibromatosis Network

Discussion topics

Beauty Mark Nation

Beauty Mark Network

Resources from NF Network

Find an NF Walk Near You

Find an NF Walk Near You

Community leaders