Many with NF2 discuss medical issues with others who also have NF2 in the NF2 community. After individuals in the NF2 community heard the Avastin trial was resulting in side effects doctors were not expecting, we decided to do our own study. It was not focused on tumor change percentages or tests, but by a survey sharing information from start of their trial to completion, or until end date of data collected in survey.
Not all individuals who had tried Avastin for NF2 tumors participated in the study. Over 100 were interviewed, and experienced similar results as data shared here.
|Time Range 1-9 Months||18 People||52.94%|
|Time Range 10+ Months||16 People||47.06%|
|Side Effects||6 People||22.22%|
|Not Helpful||7 People||25.93%|
|Reached Goal||3 People||11.11%|
|Trial Completion||5 People||18.52%|
|Cost (Stopped at 12-38 Months)||5 People||18.52%|
Not Bad Math - 1 Person stopped because of Surgery and decided not to continue after recovery due to Side Effects.
|Abdominal Pain||7 People||11.48%||1st Month||7 Months|
|Back Pain||7 People||11.48%||1st Month||11 Months|
|Bowel Perforation||0 People||0%||-||-|
|Brain Bleeding||2 People||3.28%||1 Month||6 Months|
|Cracked Cornea||0 People||0%||-||-|
|Dry Eyes||11 People||18.03%||1st Month||6 Months|
|Dry Sinuses||13 People||21.31%||1st Month||6 Months|
|Dry Skin||15 People||24.59%||1st Month||12 Month|
|Dry Throat||10 People||16.39%||1 Months||12 Months|
|Fatigue||29 People||47.54%||1st Month||12 Months|
|Headaches||13 People||21.31%||1st Month||4 Month|
|Heart Attack||0 People||0%||-||-|
|Heart Problems||1 Person||1.64%||5 Months||-|
|High Blood Pressure||15 People||24.59%||1st Month||24 Month|
|Hoarseness Of Voice||10 People||16.39%||1st Month||5 Months|
|Impaired Wound Healing||9 People||14.75%||1st Month||18 Month|
|Inflammation of The Nose||5 People||8.19%||1st Month||2 Months|
|Leg Pain||6 People||9.84%||9 Months||12 Months|
|Liver Failure||0 People||0%||-||-|
|Liver Problems||1 Person||1.64%||6 Months||-|
|Mouth Sores||7 People||11.48%||1 Months||10 Months|
|Nasal Perforations||4 People||6.56%||12 Months||18 Months|
|Nausea||14 People||22.95%||1st Month||18 Months|
|Nephrotic Syndrome||0 People||0%||-||-|
|Nose Bleeds||17 People||27.86%||1st Month||9 Months|
|Protein In Urine||10 People||16.39%||1 Months||36 Months|
|Rectal Bleeding||3 Person||4.91%||6 Months||10 Months|
|Sensitive Tongue||12 People||19.67%||1st Month||5 Months|
|Skin Rash||3 People||4.92%||1st Month||-|
|Stroke||1 Person||1.64%||20 Months||-|
|Taste Change||5 People||8.2%||1st Month||3 Months|
|Tear Production Disorder||3 People||4.91%||1 Month||12 Months|
|Premature Ovarian Failure |
Developed After 6-19 Months
|Menopause Before Avastin||0 Women||0.00%|
|Random Irregular Cycle||22 Women||53.66%|
|Stopped Completely||12 Women||29.26%|
|2 - 3 Months Between||10 Women||24.39%|
Follow up questions for additional information, were sent to participants based on personal responses to the survey.
However, due to poor health and tumor sizes prior to starting treatment, there was low expectations Avastin would be helpful enough to do more than slow down progression of condition.
Not enough women were aware that irregular cycle can lead to POF(Premature Ovarian Failure) and the risks associated with it. However, some treatment facilities start women on birth control to help control this.
Additional facts collected have been included on Bevacizumab (Avastin) - Information under Frequently Asked Questions.