Neurofibromatosis Support Group

Neurofibromatosis is usually noncancerous. There are three types of this condition. Type 1 usually appears in childhood, while Types 2 and 3 appear in early adulthood. Type 1 can cause bone deformities, learning disabilities, and high blood pressure. Type 2 can cause hearing loss, vision loss, and difficulty with balance. Type 3 can cause chronic pain throughout the body....

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rose77 04/26/2011

Has anyone discovered anything that has slowed down the tumor growth? I figured I would just reach out and see if there is possibly something that someone has tried.

deleted_user 05/03/2011

I'd like to know too! If I could do something to prevent/slow process I would.

deleted_user 05/05/2011

Rapamycin has worked in slowing down or even shrinking the tumors in 30% of the people who's on the clinical trail.

Thalidomide has also been effective in doing the same in a small percentage of people.

rose77 05/10/2011

So is this available or is it just being used for the trials. Sorry I might be asking a silly question, but I really don't know much about it.

deleted_user 05/14/2011

I don't know if it actually works but i've been told that Manuka honey is meant to help slow down tumor growth.
Research is currently being done on it too.
You can buy it at health food stores because its proven to have other health benefits too.
But just give it a google and see what you can find :)

rose77 05/16/2011

Thanks I'm going to look into the Manuka honey it can't hurt.

deleted_user 05/21/2011

The meds that I mentioned have been proven to work, but only on a small number of people. I'm on Rapamycin I've been taking it for 3 months now. I get my next mri in June. I'm hoping for some good news. I'll keep everyone posted.

rose77 05/22/2011

Yes please keep us posted

deleted_user 09/14/2011

My daughter read that alot of people with NF have low vitanin D.Someone even suggested that taking vitamin D could slow the growth of tumors.

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