Until there is a cure for NF2, it is up to the patient or guardian to best decide what treatment method to use and there are no guarantees on the outcome and risks involved. Discuss with a doctor who is well informed and experienced on NF2. Consider talking to more than one NF2 doctor if possible, which may require talking to specialists out of state/city.
Types of Tumor Treatment
The most common options that a doctor may suggest are listed below. The type of treatment the doctor may advise will depend on tumor type, size, and location. For instance, some tumors may not be eligible for radiation due to size, while others may be inoperable due to location.
Considered an invasive approach in order to fully or partially remove the tumor. Outcomes of surgery will affect each person differently on the amount of risks involved. However, a highly skilled surgeon experienced in NF2 may minimize risk.
Considered a non-invasive approach as it does not require tumor removal, however, come with risks that can affect individuals differently. The goal of radiation therapy is to prevent the tumor from further growth. Types include: SRS (stereotactic radiosurgery), Gamma Knife, CyberKnife, Proton Therapy. The type of radiation used can depend on tumor type and location. Note that the expertise of the team performing the radiosurgery can be more important than the type used.
Watch and Wait
Generally, most NF2 tumors grow quite slow and may not require treatment if there are no occurring health problems. An MRI is taken to monitor the tumor’s growth rate or changes.
Enrolling in a Drug Trial
Chemo drugs are now being considered for individuals with NF2. The types of drugs vary and if you would be interested in participating, a list of available trials can be found clicking here. Please note, since they are trials, the risks and outcomes are still in motion and not quite as well known. If there are no trials available for you, try contacting a doctor who may be offering clinical drugs off label.
There has been some research studies on using Naturals (ie. Supplements, Vitamins) for treating NF2. Using these naturals are under your own discretion. They include:
- Caffeic Acid Phenethyl Ester (CAPE) – a component of Propolis produced by bees
- Curcumin (with Bioperine) – a component of the Turmeric root
- Boswellia – an extract from the Boswellia serrata tree
- Honokiol – an extract from the flowering plant, Magnolia
- Silvestrol – an extract from the fruits and bark of the tropical plant, Aglaia foveolata
- Cucurbitacin D – a compound found in the Cucurbita plant family
- Bruceantin – a compound found in the African tree, Brucea antidysenterica