Triple Negative Breast Cancer and Avastin

Triple negative and on Avastin

Just wanted to say hey and that I am a 48 year old triple negative survivor who started with stage IIa, no lymph node involvement in June 2006. I had a double mastectomy, then 4 rounds of Adriamycin/Taxol and 4 rounds of taxol. I was never really told that TNBC was "worse".....I went to my every 3 month check ups and at my 1 year check up had a CT scan. I really didn't even have "scanxiety." I thought I was DONE!! Well it spread to my right lung. After changing to a new more aggressive oncologist, I did carboplatin, taxol and Avastin(CTA). I was so thankful Avastin was released Feb 08 just in time for me to take it. It took from April till June 08 to confirm that it was indeed TNBC in my lung +CT scan/-PET....had to have biopsy....Long story short is to offer hope. After 4 rounds of CTA, they couldn't really see the tumor area any more. I did have them remove the "tumor bed." I am so thankful I did, there was still tnbc cells in there. So at this point I was dancing with NED as they say...No Evidence of Disease. We followed up with 4 more CTA rounds which ended in February 2009. I have been on avastin alone ever since and am still dancing with NED. I read through most of the posts but not sure if I saw where anyone had posted the TNBC site. http://www.tnbcfoundation.org/
It is a wealth of information. There are so many of us on that site and the YSC (young survivors coalition) site that have been doing well on Avastin for 2-3 years even. If you were diagnosed before the age of 45, this is a great source of info and support that helps us deal with issues that affect younger/premenopausal issues.....http://www.youngsurvival.org/

Finally I don't know if many of you are aware that the FDA voted this Friday, 9/17 to postpone the decision for 90 days on whether to keep Avastin for stage 4 breast cancer patients. This was a huge step in that they could have taken it away on Friday. We are hoping that the new information that Genentech sent them on the drug as well as the 7000 signatures we sent them made a difference. On the petition you can see literally thousands of women who have gotten far better results that what was reported in the studies. 9 months to 3 years PFS. Most of these ladies seem to be triple negative. More studies will be forthcoming but in the meantime, we don't want to lose drugs that we know are helping a subset of women....What if being triple negative is part of that subset?

Because I am triple neg and NED, there are no other drugs I am eligible to take. Since we cannot take anti-hormonals, it is chemo or avastin and if you are NED, chemo is not indicated. If they take it away, I will have nothing. Just sit back and wait for the cancer to return and then go on chemo again. Not looking forward to this option.

A friend of mine (online) who's wife has tnbc and I started a petition to let the FDA hear from those of us who have bcancer or know someone who has bcancer who may need this drug. We have almost 7,200 signatures and we are shooting for at least 10,000. As much as we would like to think all this doesn't affect our children, I know it does. My 19 year old son made a youtube video to explain the AVASTIN issue. http://www.youtube.com/watch?v=PkSZ__SvxGQ

If you feel led to try and save this drug, please consider signing our petition and passing on to your friends/family thru email, facebook, twitter, etc. This drug does seem to work really well for the TNBC population. Here is a link to another TNBC sister of mine. http://www.tampabay.com/news/health/medicine/article1118371.ece

Last but not least the petition site is: http://www.thepetitionsite.com/3/stop-the-fda-from-disproving-avastin-to-treat-metastatic-breast-cancer/

Sorry if this is too much information but don't want to be "too little, too late." I think we and our oncologist need to be making our health care decisons....Thanks again. Christi