NF2 Avastin™ Informal Study Results

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

IssueExperienced BySoonestLatest
Abdominal Pain 7 People 11.48% 1st Month7 Months
Back Pain 7 People 11.48% 1st Month11 Months
Bowel Perforation 0 People 0% - -
Brain Bleeding 2 People 3.28% 1 Month6 Months
Cracked Cornea 0 People 0% - -
Dry Eyes 11 People 18.03% 1st Month6 Months
Dry Sinuses 13 People 21.31% 1st Month6 Months
Dry Skin 15 People 24.59% 1st Month12 Month
Dry Throat 10 People 16.39% 1 Months12 Months
Fatigue 29 People 47.54% 1st Month12 Months
Headaches 13 People 21.31% 1st Month4 Month
Heart Attack 0 People 0% - -
Heart Problems 1 Person 1.64% 5 Months -
High Blood Pressure 15 People 24.59% 1st Month24 Month
Hoarseness Of Voice 10 People 16.39% 1st Month5 Months
Impaired Wound Healing 9 People 14.75% 1st Month18 Month
Inflammation of The Nose 5 People 8.19% 1st Month2 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 Months10 Months
Nasal Perforations 4 People 6.56% 12 Months18 Months
Nausea 14 People 22.95% 1st Month18 Months
Nephrotic Syndrome 0 People 0% - -
Nose Bleeds 17 People 27.86% 1st Month9 Months
Protein In Urine 10 People 16.39% 1 Months36 Months
Rectal Bleeding 3 Person 4.91% 6 Months10 Months
Sensitive Tongue 12 People 19.67% 1st Month5 Months
Skin Rash 3 People 4.92% 1st Month -
Stroke 1 Person 1.64% 20 Months -
Taste Change 5 People 8.2% 1st Month3 Months
Tear Production Disorder 3 People 4.91% 1 Month12 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.

  1. 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.
  2. Fatigue: This was most notable of an issue the day of the treatment.
  3. Impaired Wound Healing: Important to note, wound healing is a severe issue with other similar clinical clinical trials.
  4. 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.
    • 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.

  5. 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.

  6. Leg Pain: Leg pain could have been the result of spine tumors and not Avastin.
  7. 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.

Additional Information

Additional facts collected have been included on Bevacizumab (Avastin) - Information under Frequently Asked Questions.

What is NF2? | About Us | Treatment Options | Sitemap

Disclaimer: Neurofibromatosis Type 2 - Information and Services, www.nf2is.org, is not run by medical experts, affiliated with any healthcare organization or any other company. No assurance can be made to the accuracy or completeness of the information provided here, the accuracy of other sites to which this site links, or of sites that link to this site. - Read More

Copyright © 2008 - 2017