Home > Research >
NF2 Avastin™ Informal Study Results
NF2 Informal Avastin Study
As of 12/07/12
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.
Included Here:
- General Statistics
- Treatment Status
- Side Effect Statistics
- Menstrual Cycle Changes
- Additional Study Notes
- Facts about Side Effects
- Additional Information
General Statistics
- Total # of People: 61
- Female: 41
- Male: 20
- Between Ages: 13 - > 55
- Duration: 1 Months - > 48 Months
Treatment Status
| Ongoing | 34 People | 55.73% |
|---|---|---|
| Time Range 1-9 Months | 18 People | 52.94% |
| Time Range 10+ Months | 16 People | 47.06% |
| - | - | - |
| Stopped | 27 People | 44.26% |
| Side Effects | 6 People | 22.22% |
| Surgery | 5 People | 18.52% |
| 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.
Side Effect Statistics
| Issue | Experienced By | Soonest | Latest | |
|---|---|---|---|---|
| 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 |
Menstrual Cycle Changes - Total of 41 Women
| Premature Ovarian Failure Developed After 6-19 Months | 2 Women | 4.88% |
| 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% |
Additional Study Notes
Facts about Side Effects
Follow up questions for additional information, were sent to participants based on personal responses to the survey.
- Cracked Cornea: While Dry Sinuses was a continuing issue for many individuals, even when severe, dry eyes either cleared up within 3 months, or did not worsen to result in Cracked Cornea in any individuals.
- Fatigue: This was most notable of an issue the day of the treatment.
- Impaired Wound Healing: Important to note, wound healing is a severe issue with other similar clinical clinical trials.
- Brain Bleeding:
- Individual 1 Brain Bleeding was minimal but continuous for some time during treatment, but bleeding discontinued after treatment was stopped. Individual is well enough years later to share the experience.
- Individual 2 Bleeding was excessive, transfusions were necessary to make up for blood loss from bleeding. Individual died one month after stopping treatment.
- Menstrual Changes and POF:
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.
- Leg Pain: Leg pain could have been the result of spine tumors and not Avastin.
- High Blood Pressure: In fifteen cases this was an issue. In thirteen of the cases it was between 1-4months. One person at 12months and another at 24months.
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.
Additional Information
Additional facts collected have been included on Bevacizumab (Avastin) - Information under Frequently Asked Questions.
