NF2 Drug-Based Treatments are experimental and only available through clinical trials.
All Clinical Trials for Neurofibromatosis Type 2 (NF2) tumor management that are now or had been in clinical trials for tumor size reduction can be seen in the list included.
Drug-Based trials that ended can also be seen here, for awareness of what treatments have been discontinued over newer options. Links to each discontinued treatment explains the reason the treatment are no longer considered as a possible option.
Links to existing drug-based treatments include known side effects. Awareness of side effects can help allow life adjustments to continue with treatment for a longer period.
The NF2 gene provides instructions for the production of a protein called MERLIN, also known as Schwannomin. This protein is made in the nervous system, particularly in specialized cells called Schwann cells that wrap around and insulate nerves.
Merlin helps regulate several key signaling pathways that are important for controlling cell shape, cell growth, and the attachment of cells to one another (cell adhesion). This protein functions as a tumor suppressor, preventing cells from growing and dividing too fast or in an uncontrolled way. [NIH, Genetics Home Reference]
Currently, NF2 Drug-Based treatments are only Targeted Tumor Therapies, which have yet to do anything other than a percentage of tumor management for one tumor type at best. A few trials have proven to help some people with Schwannoma, but recent trials started in 2017 are showing promise for Meningioma.
While there are advantages to considering participation in clinical trials for treatment, it is important to do everything you can to be aware of dangers for treatment before participating in a medical trial. There are different phases of clinical trials, each phase or step in the approval of a drug or treatment is carefully monitored to determine the effectiveness and possible side effects of each treatment.
Learn more about Clinical Trials
Each Trial is associated with a page here listing side effects and things that can be done to allow people to stay on each trial longer when possible for maximum treatment, just click the trial name. To read further about a trial at www.clinicalrials.gov, click the trial number.
Avastin is the longest running tumor suppressor medication. When it works, it has the possibility of affecting all tumor types in the brain and spine. The rates tumors might change are different for each, when it works.
While side effects are generally minimal, after time it can become hard to tolerate, and there is a chance of fast tumor regrowth after discontinuing treatment. Read more on side effect issues and other data collected in the Avastin - NF2 Community Informal Study.
(Cabometyx™) has not been approved as an NF2 trial on its own, but some locations are using it in combination with Avastin as an enhancer to improve the the percentage of tumor reduction. On its own Cabometyx is on trial for many Cancers as well as NF1 - Plexiform Neurofibromas - NCT02101736.
The Sunitinib clinical trial # NCT00589784, titled "Phase II Trial of Sunitinib (SU011248) in Patients With Recurrent or Inoperable Meningioma" was a trial for people with; CNS Cancer, Meningioma, Intracranial Hemangiopericytoma, Hemangioblastoma, Neurofibromatosis Type 1 as well as Neurofibromatosis Type 2.
Sulforaphane (SFN) is an Isothiocyanate found in cruciferous vegetables. While this can be obtained by consumption of the right food or vitamin form, other food and herb forms have been in trials and have proven to have potency enough to control tumor size on their own safely.
Trials should be available before the end of 2016 and while this seems like the preface; simple and
WARNING: Before the trial starts, we know there are issues people using it to prevent hearing loss will have. The first sign of hearing loss is Tinnitus and a known long accepted side effect of Aspirin includes Tinnitus. Exact dose by age per individual for many reasons will need to be determined since Aspirin is also a blood thinner and can cause additional issues. Warning statement is in place because even if approved it would likely require regular blood test and monitoring for whole body health.
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