Help me in finding a clinical trial for herceptin

Hi All,

I was diagnosed with stage 3b,her2+++ breast cancer this september. I am 37 years and have two small kids(one is 4years and another 3 months).
I finished chemotherapy with AC and currently taking Taxol. The last Taxol will be done in another two weeks and then there will be surgery. My oncologist doesn't tell anything about his plan of treatment after the surgery. I am sure he is not going to give herceptin. I really want to do anything to stay alive for my kids. I want to participate in a clinical trial for herceptin after my surgery. I live lin california, but am willing to travel anywhere to get it. Please Please help me find a clinical trial for hercptin. I am searching for it online without any success so far.

Thank you so much

Julie,
You are in my thoughts and prayers... this is a beastly disease, and you will be around to see your children grow up. What has your doctor told you about herceptin, and why don't you think he will give it to you. My doctor told me if my cancer showed back up this is exactly what he would do. You know many new advances are coming up, and with all of us out there fighting, a cure must be near. Do you do any alternative therapies? I will send you a QiGong tape if you would be interested. It is a 10 minute breathing exercise to boost your immune system and your internal organs.
How did you fair on your chemo? How did you finally get dx ? Hollis

[Lolly]

Juli, I don't know of any Herceptin trials for earlier stage Her2+ except the ones Genentech is sponsoring, which randomizes volunteers to different arms so that some get Herceptin and some don't. Since you feel so strongly that you must have Herceptin to stave off recurrence, finish out your tx with your current doc, get your surgery done, then start "interviewing" for another oncologist who will be more sympathetic to your situation. Several of the women on this board, with early stage disease, have been able to get Herceptin prescribed by their oncs "off label", which means their docs consider it medically necessary for them to receive it even though it's not FDA approved for early bc, YET. I think since you are Stage IIIB, and so young with children, you have a good chance of finding a doctor who will help you. You may have to travel to another city, but you indicated you would be willing to do that for a trial, so that's another option for you. Good luck to you, and keep us posted.

Love, Lolly

Julie:

I am Stage 2B and I am receiving Herceptin off label for a year. Before I finished my taxol treatments I brought up my desire to try Herceptin reminding my oncologist that I had asked him about getting into a Herceptin trial at my first visit (he did not help me pursue a trial at that time). After bugging him twice his office called my insurance company and they agreed to cover the Treatment which surprised me as I belong to a HMO and live in Arizona If my insurance had not covered it my Oncologist had talked the drug rep into providing the Herceptin at no cost with me paying only the infusion costs.

If your oncologist refuses to give you Herceptin ask him about a local trial and/or if he knows a fellow oncologist that is willing to provide Herceptin off label. Sometimes just thinking they will lose business will prompt the oncologist to step outside their box.

Have you gone into any of the trials registries? Unfortunatley, most of the trials want the patient from their first chemo on.

I wish you the best of luck. Barbara

Hi Julie,
Gentec and NCI has clinical trials with herceptin If you go to this page: http://cancerconsultants.com/what_data.html it lists all the trials.
Good luck,
Al

You don't need to be in a clinical trial to get herceptin. I stage 2A and asked for it. I'm getting it every week for a year and insurance pays.

Julie,
Here is a list of ongoing clinical trials for Herceptin (Trastuzumab).

Where do you live in California? We are here in North San Diego County.

Regards
Joe


Herceptin Clinical Trials





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Hi Julie,

So you live in California, which part? I do, and I was diagnosed at 3b 2 years ago. Was able to get Herceptin off label, didn't have to fight tooth for tooth with my onc to receive it. Easy access!

If you want to ask me any questions, welcome to send me email at: acrobaticfan@yahoo.com

Gotta run now, as I'm on my parents' computer. (not unlimited time for online usage here)

Happy Holidays! ~ JO.

Julie,

Hi again, I forgot to mention that I was to have Herceptin off label for one year only, since I was only stage 3b. Now with a recurrence diagnosis from last year, I have been on Herceptin indefinitely.

It just depends on the onc place. Some oncs are aggressive and willing to give Herceptin to earlier stages, for now generally up to one year. Others flatly refuse unless you are stage 4.

Good luck!

Hi Julie,

First off, I just wanted to say how sorry I am that you've had to find this board--but as you see you'll get lots of help here. Our kids were 13 and 5 when Rachel was diagnosed two years ago, so I know a little about some of the particular challenges you're facing.

I think it's probably clear from these posts, but I wanted to make sure: I really don't think you can get herceptin in a clinical trial at this point. Most (if not all) trials require that you enroll before you start chemo. The only exception I know of with herceptin is the HERA trial and that's only in Canada, Europe etc. but not the US. And they don't accept women from outside, even if you could travel.

But don't despair: LOADS of women get herceptin off-label now for just the stage of bc that you have. In fact, Marc Pegram, who's a leading bc researcher at UCLA has even said in interviews that he and his group have from time to time offered herceptin to women with larger tumors and/or multiple nodes. So, I'd quickly push your doc to reconsider (I can send you links to the Pegram interviews if you want, just email me at melnick@babson.edu). If this doc says no, then switch and find one who will.

Genentech, makers of the drug, have a patient assistance program: they'll help you appeal IF your insurance turns you down (unlikely) and will cover the cost if you get turned down on third appeal and your household income is under 75,000. We found this all out "just in case" and then Rachel found a doc near us to give her the herceptin off-label. Never heard a peep about it from the insurance co.

Good luck,
Jeff

Hi there,

I read the other posts and the fact that your doc never discussed the importance of Herceptin is a little concerning. My mom was dx in March and I spoke to 3 dff oncs. all who thought that she should have Herceptin in the context of a trial or not( what is know as off label).
Please look for another doc to get a second opinion about the Herceptin. The trial my mom's on called b-31 is only adjuvant so you must have had the surgery already, unfortunately. I live on the east coast, so I don't have any reccommendations for you, but if you are unable to get the Herceptin, you can look for U.Washingtion's vaccine trial and I think UCLA is also offering one. THis seems unfair that it is happening to someone so young, but I guess we never know what life holds for us. Don't be afraid to talk to many doctors before you settle on a treatment, you need to do what's best for you. THis website is excellent and has many very knowledgeable people to help you with any gray areas. I hope that the rest of your treatment goes well and all the best for a complete recovery.
XOXO
Anne

Thank you all for the wonderful replies, they give me lot of courage to face the decease. This website is really awesome.
Most of the trials I have seen online are with chemo, the only trial with just herceptin is only for stage2 and 3a. I will keep looking for them and keep you posted. For those of you who asked where do I live, I live in bay area, California.

Thanks!

[Rozebud]

Julie - Lots of helpful info. I'm stage IIIC and am in a clinical trial on a herceptin arm. However, if I wasn't, I was going to go to an onc that will offer it off label. Look at the June 2004 MD Anderson study - they give herceptin to ALL "early stage" her2+ patients prior to surgery, regardless of stage (I-III), as of this summer. They are one of the best of the best when it comes to cancer. Show that study to your onc and also you can petition genetech to cover you. I know you can find someone to give it to you off label.
Here is a link to it:
http://www.news-medical.net/view_article.asp?id=2246

Anyway, so many other women responded, that wasn't my main point in writing to you. I was dx'd in January while 7 mo. pregnant and they induced me in order to start chemo. I'm wondering if you weren't also dx'd while pregnant. My little one is going to be one on 2/6/05. Anyway, hang in there, it's tough....but you are a survivor. I can see it in your post!

Hello Julie,

I also live in Bay Area. Are you a CA native? About 75% of CA residents are from OUT of state, so I happen to be part of the 25% CA-born folks.

I had 2 other 2nd opinions on breast cancer treatments. Plus, I occasionally get additional input from another doctor's sister (who is an onc for breast cancer at Harvard Dana Farber) through my brother's local network.

I was able to get Herceptin off-label in San Francisco.

f you want to get my 2 cents, you are welcome send an email to me at: acrobaticfan@yahoo.com.

Good luck! :-)

Dear Julie,

I wasn't aware that you had to be participating in a clinical trial in order to get herceptin. I was getting herceptin or almost a year in conjunction with chemo before I enetered the study I am currently in (GW572016).

I would seek a second opinion from another oncologist if I were you. I am currently being treated by a breast cancer specialist and the University of Indiana in Indianapolis for my metastatic Inflammatory Breast Cancer.

I am close to your age and have four children ages 13, 12, 11, and 9. So trust me I know what you feel like by wanting to be here for them. If you would like to talk so that I can keep you updated please feel free to email me at FisherRN2B@aol.com

Best Wishes, Martha

Hi Jojo,

Thanks for your response. Could you please tell who is your oncologist in Sanfrancisco? I would like to seek his opinion and ask whether he will be willing to offer me herceptin offlabel.

Thanks