Clinical Trials

Last Updated: 09/19/16

NF2 Targeted Treatments

All Clinical Trials for Neurofibromatosis Type 2 (NF2) tumor management that are now or have been considered for tumor suppression (shrinkage) will be included here. Previously considered treatments are included to note the types of treatments considered, to help learn what advantages they had to help determine criteria of new and better treatments, since none has found to be effective enough alone.

The missing or nonfunctional protein MERLIN causes the damage of NF2 and can cause the growth of Schwannoma, Meningioma and Glioma. Despite best efforts, researchers have yet to find a treatment that can target all of these tumor types because of the complexity of MERLIN. So currently NF2 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 have proven to help some people with Schwannoma.

1. How Clinical Trials Work

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 a 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

2. Current NF2 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.

1. Bevacizumab (Avastin™)

  • Trial Availability: Most Countries
  • Tumor Target: Vestibular Schwannoma
  • Treatment by: Intravenous or Port
  • Recruiting Trial: NCT01767792
  • Active, Not Recruiting: NCT01125046
  • Completed: NCT01207687

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.


2. GSK2256098

  • Trial Availability: USA
  • Tumor Target: Recurrent Meningioma
  • Treatment by: Pill - Oral
  • Recruiting Trial: NCT02523014

3. Axitinib (Inlyta™)

  • Trial Availability: USA
  • Tumor Target: Vestibular Schwannoma
  • Treatment by: Pill - Oral
  • Recruiting Trial: NCT02129647

4. Endostatin

  • Trial Availability: USA
  • Tumor Target: Vestibular Schwannoma
  • Active, Not Recruiting: NCT02104323

5. SOX 10 (MLN4924)


6. RAD 001 - Everolimus (Afinitor™)


7. OSU-HDAC42 - AR-42

  • Trial Availability: USA - Ohio only
  • Tumor Targets: Meningioma and Schwannoma
  • Treatment by: Pill - Oral
  • Recruiting Trial: NCT02282917

8. Lapatinib (Tykerb™)


9. Nilotinib (Tasigna™)

  • Trial Availability: Canada
  • Tumor Target: Intracranial Schwannoma
  • Treatment by: Pill - Oral
  • Terminated: NCT01201538

10. Sorafenib (Nexavar™)

  • Trial Availability: UK
  • Tumor Target: Intracranial Schwannoma
  • Treatment by: Pill - Oral
  • Recruiting Trial: CPMS10563

11. Erlotinib (Tarceva™)

  • Trial Availability: Canada
  • Tumor Target: Intracranial Schwannoma
  • Treatment by: Pill - Oral
  • Trial Status and Availability, Unknown at this Time

12. Imatinib (Gleevec™)

  • Trial Availability: Canada
  • Tumor Target: Intracranial Schwannoma
  • Treatment by: Pill - Oral
  • Trial Status and Availability, Unknown at this Time

13. Sunitinib (Sutent™)

  • Trial Availability: USA
  • Tumor Target: Intracranial Meningioma
  • Treatment by: Pill - Oral
  • Completed: NCT00589784

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.


14. Selumetinib - AZD6244

  • Trial Availability: UK
  • Tumor Target: Intracranial Schwannoma
  • Treatment by: Pill - Oral
  • Trial Status and Availability, Unknown at this Time

Potential NF2 Clinical Trials

1. Aspirin

Trials should be available before the end of 2016 and while this seems like the preface; simple and inexpensive answer.

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.

2. FRAX597

3. Ado-Trastuzumab Emtansine
(Kadcyla™)

4. Cetuximab (Erbitux™)

5. Sirolimus (Fermentek™)

6. BEZ-235 aka NVP-BEZ235

7. Dasatinib (Sprycel™)

8. Vandetanib (Zactima™
and Caprelsa™)

9. Somatostatin


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