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Clinical Trial Misconceptions

Author: Lori Davila
Date: April 18, 2016


No treatment has been found to kill all Neurofibromatosis Type 2 (NF2) tumors and prevent additional tumors from growing, but there are Clinical Trials that can help slow down or shrink existing tumors. More research is needed for the full cure.

There are a few misconceptions about the NF2 Clinical Trials that everyone with NF2 should know:

  1. NF2 Clinical Trials are not Standard Chemotherapy
  2. NF2 Clinical Trials are Target Tumor Treatments
  3. NF2 Clinical Trials are Not Guaranteed to Work
  4. Additional Clinical Trials
  5. Clinical Trials are not Cures but Are Helpful

1. NF2 Clinical Trials are not Standard Chemotherapy

None of the NF2 Clinical Trials are Standard Chemotherapy treatments; this is important to know since the side effects from actual Chemotherapies effect everyday life and as a result can only be taken for a few months. Standard Chemotherapy kills all cells it comes in contact with.

Understanding that NF2 Clinical Trials are in fact not Standard Chemotherapies should help allow more with NF2 consider them as a possible treatment option

2. NF2 Clinical Trials are Target Tumor Treatments

NF2 Clinical Trials are Target Tumor Treatments which means the only cells in the body they harm are tumor cells, whereas Chemotherapy treatments kill all cells. Target Tumor Treatments can be taken for considerably longer and side effects typically start as minimal issues and before they reach serious health issues, the treatment can be stopped allowing any health issue from side effects in most cases to heal on their own.

Unfortunately since the treatments kill tumor cells only and are selective, none for NF2 has been found to be capable to shrink or control; Schwannoma, Meningioma and Ependymoma.

3. Clinical Trials are Not Guaranteed to Work

None of the NF2 Clinical Trials are guaranteed to help, not even Avastin. Avastin is simply the longest running Clinical Trial.

4. Additional Clinical Trials

Avastin is the most commonly suggested since it has been a Trial for about 10 years but is in IV form and requires hospital visitation for each treatment and costs considerably more. RAD-001 and Lapatinib are pill form and therefore cost less with the downside of not shrinking tumors to the same percentage as Avastin. For anyone considering Clinical Trials it is important to know the side effect differences, the availability options and that there are other options that might help if a trial does not work. Researchers admit that for unknown reasons none of the trials helps everyone with NF2.

5. Clinical Trials are not Cures but Are Helpful

NF2 Clinical Trials are not cures but are helpful if they stop or just slow down tumor growth rate for a short period of time. Each delay in tumor increase delays the need for health issues from tumors that require surgeries. Some of the Clinical Trials can delay tumor growth for several years.

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Learn more about NF2 Clinical Trials - here