Avastin News =A call for help
I don't know if you all are aware but the FDA advisory panel voted 12-1 to pull avastin for mbc patients. I am posting this on the mets forum and the triple negative forum in that even if you aren't mets, being triple negative, avastin can be a wonderful drug option and if you are metastatic like me, it is the only drug I can take being NED as I am. I took carbo, taxol and avastin for 6 mos, became NED and have been on avastin alone for 17 mos still NED. It took less than a year for my cancer to metasticize to my lungs after my original diagnosis because I had "nothing" to take to keep it from coming back/spreading. So I feel like I am ahead of the game. I have few side effects, and most have improved with time. I Know many of you have taken avastin in the past and may or may not have ahd a good run with it. I am hoping that we can get a letter writing campaign together to speak up to the FDA for those of us who have nothing else to take.
The med is not being pulled for safety reasons, it was just the studies didn't show that it extended lives as long as they thought it should to bear out the risk of the side effects/complications. They know that this drug is a miracle drug for some of us but they don't have the clinical trial information on us specifically to back up a fight to the fda. This would be a huge disservice and frankly a earlier death sentence to many of us triple negatives. Several organizations are working with Genentech (the makers of Avastin) to see what can be done on our behalves. If you want to speak up for us or potentially yourselves as you never know if you will need this drug in your arsenal, please let me know. I will be posting some more information as I get it.
The Young Surviviors Coalition, Inspire and TNBC are all getting polls together on women who have been on this med. If any of you know anybody with any connections, please feel free to contact me.....Oh, and if you want to write your experience with avastin to me where I can share it with outsiders, please PM me as I would not share anything on this site without your permission but am looking for stories in support of keeping the drug as an option. I know some women who it did not help or that they had side effects and stopped the drug but even most of them are speaking up so that we don't lose this drug as an option to treat MBC. Anything you can do to help would be greatly appreciated. thanks Christi
Genentech press release: http://www.gene.com/gene/news/press-releases/display.do?method=detail&id=12887
CNN Story: http://pagingdrgupta.blogs.cnn.com/2010/07/20/panel-revoke-drugs-use-in-breast-cancer/
Comments
-
Oh, and for those of us who are on the drug now, If nothing is done, the FDA will disapprove the drug, September 17, 2010, which means in most cases, your insurance will not cover it, so in my case, I have 2 more doses, August 9 and Aug 30. So Time is of the essense. Now is not the time to do nothing. We need to act or we will lose this viable treatment which works well in so many women. thanks. Christi
-
that is awful, i am in ireland and did it with tc treatment as part of a trial to see how well it is tolerated with chemo, i had 18 infusions 3 weeks apart, as part of my primary treatment for her2 negative breast cancer, i think it was only open to stage 2 and stage 3 non mets bc for this particular trial. i only finished avastin in June and was told by both oncolgists that it is showing great promise for wider use in treating all cancers including early stage.
-
-
Bout to wish I were in Ireland...Do you know how much a dose it is over there??
-
its free of charge because its a trial it is sponsered, it would be free anyway as my health ins would cover it if the oncologist recommended it. it would also be free on our public health system if the specialist recommended it. Our system is totally different to yours, we pay for the specialists and our operations under the private system but not the drugs. (or rather our health ins pays for them).
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team