Looking to either get Herceptin or Vaccine

I was diagnosed this past March with Stage 3 Breat Cancer. I was 33 at the time. Obviously I really want to do EVERYTHING in my power to stay alive as long as possible with good quality of life.
I am currently in a clinical trial for herceptin, but not in the arm to get the drug herceptin, just the standard treatment and observe. Disappointing I know.
I hear of all these trials, but with my age, I don't qualify for some, then with my diagnoses, I dont qualify for some. So, I am still searching.
Ok, enough with the rambling... Question is.... should I get out of my clinical trial of standard treatment and observe and DEMAND herceptin? Is Herceptin only for after you have a reoocurance? Can you get Herceptin after you have a reoccurance? What is the trial with the Vaccine?
Basically looking for someone in their 30's that is in a trial actaully getting the wonder drug.

Shannon,

Herceptin is only FDA approved for metastatic breast cancer, meaning it has spread to another place. This means that most insurance will not cover it unless you have mets. Recently, however studies show that getting herceptin before mets especially in combination with another drug is more effective. I would try to make sure I could get herceptin before leaving the trial. You might also try getting it directly from the company for compassionate use. I don't know if you started treatment yet, but if you haven't there are a lot of herceptin combination trials out there that look pretty good.

There are 2 places to get into the vaccine trial. That would be the University of Washington trial and the Windber trial in Penn(Also Walter Reed in DC if you have army benefits). There are links to both of those on this site. I know for a fact that the Windber trial will not take you if you have participated in another trial. I realize location might be an issue.

Shannon:

I am Stage IIB and I am receiving Herceptin off label and my insurance is paying. I bugged my oncologist until he requested authorization from my insurance. If my insurance had not paid, my oncologist had worked it out with the Herceptin Drug rep to provide the drug free and I would pay the infusion costs. I truly believe that we have to be strong advocates for ourselfs. I would like to get a second year of Herceptin (there is a trial with 3 arms going on outside of the USA with 1) no herceptin, 2) one year of herceptin and 3) two years of herceptin. The trial is just starting so you and I will not have the results in time but the existance of the trial gives me ammo to use in my discussions with my oncologist next Summer when my 52 weeks are completed.

Shannon:

I am Stage IIB and I am receiving Herceptin off label and my insurance is paying. I bugged my oncologist until he requested authorization from my insurance. If my insurance had not paid, my oncologist had worked it out with the Herceptin Drug rep to provide the drug free and I would pay the infusion costs. I truly believe that we have to be strong advocates for ourselfs. I would like to get a second year of Herceptin (there is a trial with 3 arms going on outside of the USA with 1) no herceptin, 2) one year of herceptin and 3) two years of herceptin. The trial is just starting so you and I will not have the results in time but the existance of the trial gives me ammo to use in my discussions with my oncologist next Summer when my 52 weeks are completed.

Just a quick note: the European trial (and Canadian, Australian, etc.) that is testing herceptin for two years have been up and running since 2001, if I'm not mistaken. So, one good thing is that while they have no efficacy date yet, they have plenty of safety data (I have an email from Brian Leyland -Jones in Canada confirming this), and it's all good.

Email me off list (melnick@babson.edu) if you want a copy of a memo we wrote to Rachel's doc to try to get him to extend herceptin for a second year. He said no but I still think it was a good try!

Best,
Jeff

Shannon, I was diagnosed in May with Stage IIB, and have been accepted into the clinical trial for Herceptin through Swedish Hospital in Seattle. I've rotated into receiving Herceptin ever week for 52 weeks after finishing Taxol, which will be January 21. I have also talked with other women who are Stage II and have received approval through their oncologist to receive Herceptin outside the study even through it is not "officially approved". Keeping working on your oncologist.
Dail

[Rozebud]

Shannon - your story sounds like mine. See below.

I'm on the herceptin clinical trial in a herceptin arm. While we know herceptin won't prevent mets, there is good evidence it might help decrease recurrance. Look for the MD Anderson study where they now give herceptin to ALL stage I-III patients who are her2+ (June 04). Bring that to your onc and really push if you think it's the right decision for you.

Best of luck - Rose

Dx'd 1/04 at 33, while 33 weeks pregnant (baby devliered at 35 weeks and is now >100% in weight %)!

Dx: Stage IIIC IDC, ER-, PR+ (23%), Her2=2.7, 2.5cm primary tumor, grade III, 11/18+ nodes (largest 3.8 cm)

Treatment: A/C *4, T *4, 1 year of herceptin, mastectomy, rads (7 weeks), tamoxifen and zoladex (5 years)

I am new to this board (today), and I am still somewhat ignorant about all this -- you all are talking about Herceptin being approved only for metastatic BC treatment -- yet I am getting weekly chemo before my surgery -- Herceptin along with Taxol and Carboplatin. I was diagnosed in late November, then started chemo 10 days later. There is no evidence that my cancer has spread anywhere else in my body. Surgery will be in February or March.

My tumor has shrunk from about 320 cubic cm to about 10 or 20 cubic cm in 6 weeks. We are waiting for maximum shrinkage before scheduling surgery. I am hoping for a lumpectomy.

Are you talking about a Herceptin vaccine as not approved for localized cases or are you talking about Herceptin as part of a chemo treatment plan?

[Lolly]

Hi vp,
Welcome to the group, hope you've found some good information here as there is alot available! Herceptin HAS only been approved for metastatic disease, but some like yourself have been able to receive it "off protocol" in earlier stage disease; as Rozebud points out:

"...While we know herceptin won't prevent mets, there is good evidence it might help decrease recurrance. Look for the MD Anderson study where they now give herceptin to ALL stage I-III patients who are her2+ (June 04)..."

Congratulations on having a progressive oncologist, clean scans elsewhere and best wishes for continued shrinkage of the tumor!

Love, Lolly