Herceptin while NED?

What about people that are NED and a year or two (or so) past chemo treatments, that didn't receive the Herceptin? Are they going to ask for Herceptin?

I know I plan to discusss it with my doctor. But the onc will undoubtably not be in favor due to the unchartered waters at that stage. There would be many questions: How much chemo? How often? For how long? and more.

We don't know if Herceptin has to immediately follow chemo to be effective. It seems to me that a lot of people will rationalize that it is worth the "risk," however.

What do you think? Am I way "off" in my thinking?

Barb

Barbara, I have similar questions. I was diagnosed Nov. 2002 lumpectomy er/pr neg HER 2+++ had A/C, Taxotere and 6 weeks of radiation. Finished treatment July 2003. So far everything is going along with regular check-ups etc. but I wish the Herceptin issue had been settled then because now I wonder, like you, if it is too late. Don't have appointment with onc. until July but plan to place a call tomorrow and see what their policy is. I had requested herceptin right from the start but onc. said just used for recurrence - I don't want to wait for that event - I'm sure most of us are willing to risk side effects. Please post if you have an answer to this question. Thanks

No answer but I've had the exact same thought. I also asked for Herceptin at time of diagnosis and onc said the risks far outweighed the benefits since I was Stage 1, node negative. It's been 4 1/2 years since my diagnosis. I just had an appointment with the onc about 2 weeks ago, just before the news release; don't go back until October, so I'd love to hear what others have found out.
Thanks,
Gloria

I will be getting Herceptin for a year b/c I am just finishing up my chemo, but my concern was staying on longer. My onc said there is a very good chance that studies may be started looking at long term use of Herceptin. He didn't know anymore details, but someone who is in your position my qualify for a study like that. You may want to tell your onc you are interested if anything comes up soon.
Laurie

This is a fascinating discussion and I look forward to hearing more. I'm er- and her2+++ and took herceptin for three months following chemo. Even having taken it, I, too, wonder if having been on it longer would be helpful. But, who knows at this point? I did push for it though and am glad I did and got the 12 weeks. Some women who may have had one positive node or a microinvasion have taken it anywhere from four months to six months to one year, so it seems like doctors are all over the map with this. Let's keep the dialog going since we seem to truly know what's in our best interest in spite of the fact that we have to push, coerce and strong arm our physicians for herceptin.

Thanks so much for your replies. I'm counting my blessings.....a negagive PET scan report today. I am so thankful, but I hold my breath after every test, fearing the return of cancer and thinking the "what ifs" about herceptin. I'd feel more confident and satisfied with having done all I could, if I had received the herceptin.

I was diagnosed at age 52 in September 02.
Stage 2b
1 positive node
er+ 10% PR-
4.5 centimeter tumor, Her 2 + (8.7 on the FISH test)
Mastectomy, followed by another mastectomy a year later at my request.
5 1/2 treatments of FEC chemo.
Arimidex following chemo

I wanted to take Taxol too, but became too ill to continue more chemo, and had to remove the port. The herceptin trial wasn't an option because I had SVT's (rapid heart rate) and the doc didn't want to give it to me "off book" either, because of the heart issue.

Soooooo, I fixed the heart, and am ready for more options.

I see the onc on Monday, and will definately discuss the Herceptin issue. It helps all of us when we share info that we learn from our oncologists and of course the ongoing cancer updates that are shared on this board. Thanks to all of you who had imput in this site. It too, is a blessing to us all.

Barb

I was one that was in the clinical trial for Herceptin that was ended early. When I enrolled in the trial I was put into the non-Herceptin arm of the study. I visited my onc today and was told that they were going to give (well, not "give") it to everyone with her2 now! She even mentioned that there has been a lot of talk about who they need to call back that have already finished chemo.

If I had finished chemo within the past few years, I would call to see if I could get the herceptin. I don't think the doctors quite know what to do with it yet and are trying to establish some sort of protocol.

I am new to this site but am finding it very informative. I have inflammatory breast cancer and had a mrm last year. Everything came out clean except for some small residual cells in the tissue, tumor gone. Dr. said they were removed with the mrm. Okay, so onc. puts me on herceptin for three cycles with taxotere. Have a petct and everyting clean. Go for 33 rounds of radiation and two weeks later, I have IBC in my left breast. Had a left breast mri prior to original surgery and it was clean. I just had my left mrm and prior to it the mri and petct were perfect. Everyone epects a clean path. so the question is, should I be put back on herceptin? I am also concerned about my insurance paying for it. I think the doctor will probably put me on the herceptin with a chemo for a short period and than we all have to hold our breath. Has anyone beenin my situation? Thanks again for such a great site. Ellen from Long Island

Hi Ellen,

I don't know too much about IBC but there are several women here on the board who can probably help you. I do live on LI though, in Deer Park. Where are you?

Susan

I have the same question. I tested HER/2 positive and node negative back in 2000. I asked for Herceptin, but was told I did not qualify. I had four rounds of AC, also at my request. Can those of us that are HER/2 positive get Herceptin if we were node negative and had our surgery and chemo several years ago? With these new trial results, I hope more emphasis will be put on possible prevention before recurrence. I like to here what results others have in discussing this with their oncologists or if you hear of any related trials. I'm so glad to find this group!

Karen

I'm in the same boat as you. I was diag. Stage III in July 2002 and ended chemo in Jan 2003. I didn't get herceptin as I didn't qualify for any of the trials and my onc. wouldn't give it off label. I had an appt. w/her on Fri and discussed this issue. She said right now there is no clear answer whether herceptin would help us or not but she did say if I decided I wanted it she probably wouldn't have a problem giving it to me, since it wouldn't hurt me. She also said she was sure this would be discussed at the upcoming ASCO conference, so I'm going to discuss it with her again once she gets back. Right now I'm leaning towards trying to get it. I don't know if insurance would cover it, though, this far out, so I guess that will be another hurdle.

Pat

I finished CEF treatment in March 03. I talked to the onc yesterday and he said he would give me herceptin now, because of the findings of the clinical trial usuing Herceptin. I can start as soon as I'd like.

I, too, am wondering about the cost and if the insurance will pay. Guess I will call them and see what they say, and go from there.

Barb

Barb -

Do you know how often and for how long your onc. is recommending you receive herceptin. I'll also be interested to know what your onc's office says about insurance coverage (I have fed BCBS). Hopefully my onc will still be willing to give it to me after the ASCO conference. I can't believe I'm contemplating volunteering for chemo again...but I figure I need any edge I can get.

Pat

That's the way I see it, too. It may be just what we need to stay NED.

It looks like my insurance will pay. My onc may have to send information to them so they know I qualify.

He said I would have it for 52 weeks, as was done in the clinical trial. If I need to skip a week for a vacation, or whatever, then I could skip it. But in the end I would still receive 52 doses.

Barb

I was in trial NCCTG N9831 and my heart function decreased after receiving AC. They won't give me Herceptin. Anyone else in this situation?

The last I heard, insurance DOES cover Herceptin, but the cost usually has to paid upfront by the patient. You would then be reimbursed. But, it's $4,000 a dose.

Gloria, it sounds like you and I are in the same boat - 4.5 years since diagnosis. I'll be going to the oncologist later this month and will be sure to ask about Herceptin. Maybe if enough of us ask for it, the issues will be addressed.