Hi I'm new here/ Q re length of Herceptin treatment

[Cannon]

Hi everyone, I have been reading the boards for a while and I thank you for all the information and support you share. I already know to thank Joe and Christine for making this place available for all of us. Thank you!

My details are in my signature (which hopefully will show up).

My question is about the length of treatment with Herceptin. As I understand it, some folks who are stage IV are on it indefinitely. And the reocmmendation for "early" cancer is one year.

Since I was Stage III, I feel like I'm somewhere in a no man's land. And of course, I am nervous about the idea of stopping it. My oncologist (who I love) is researching it and thinking about it, and I am looking for whatever wisdom you all have here. Thanks.

[Bev]

More study info should be released either this Dec or next spring. Maybe you could try to stay on it til the info becomes available. For early stage there is lot's of data that supports a one year run. Can't say I've seen anything geared specifically to stage 3. Good luck. BB

[sassy]

I too am a triple positive stage III. You can see all my info in my signature. The standard for stage III is the same as "early", which is one year. My onc kept me on for 18 months--we were hoping for the results of the two year trials. He found early info on the two year study indicating that two years was not statistically significantly better than one year, so we stopped at that point. I'm comfortable with the amount of Herceptin I received--even though at first it felt like my "security" was gone.

Were you post menopausal when diagnosed? I ask because I am taking Lupron to stay in menopause and am interested in what others are doing.

Sorry you had to join this group, but you will find great information and support.

My best to you.

[Cannon]

Hi Sassy, I was premenopausal and chose to have my ovaries removed at same time as mastectomy. I had already had a hysterectomy due to fibroids and lots of bleeding. There is some indication that aromatase inhibitors are better for HER+ than tamoxifen, and you can only take those post-menopausal, or suppressed, as I guess you are. I am in general willing to get rid of any superfluous parts at this point. No thyroid, no uterus, no ovaries, no breasts, no appendix, no 6 foot or so of intestine - at this rate, you'd think I would weigh nothing. Not true!

[Vanessa]

Hi, welcome to the site, even though I am sorry you have to be here. I am stage iv, so I was going to be on Herceptin indefinately, but I am now moving on to Tykerb and my dr. will possbly add Herceptin again later. Best wishes for your treatment. I hope it goes well.

[Connie Jean]

Hi
I was on Herceptin for 18 months. It was such a security blanket for me and I felt fearful of ever ending it. My onc was going to continue it until the 2 year mark. But he suggested trying Tykerb, as it is a small molecule that passes the blood brain barrier. The program "Tykerbcares" got my insurance to cover it. I have been on it for 3 months now. I am one of a handful of his patients on it as a preventative to recurrance. I will have my 6 month scans in December and will hopefully continue to be NED.
Life is good.
Connie

[Becky]

I am going to San Antonio (Breast Cancer Sym) in December and I received the agenda. The 2 yrs of Herceptin HERA trial data will NOT be presented.

I just wanted to make sure one doesn't wait for this data date as it won't be then.

[Cannon]

Thanks everyone. I had definitely not heard of using tykerb prior to a recurrence, Vanessa. I'll let you know what my onc comes up with.

[Linda]

Hi Cannon:
My dx is close to yours, except that I'm older (52 at dx) I was stage 3a after neoadjuvant chemo, same treatment, etc. However, I'm hormone neg, so fewer weapons post initial treatment. I asked the same questions at the end of my herceptin year. My onc was ready to extend the herceptin, and called "her experts," -- a couple of docs who'd been part of the orginal herceptin trials for more info. She was told that, as the others wrote, there was no shown benefit for 2 years of herceptin (unless you're stage 4, obviously.) My doc also said that the fact that we're not hearing more about 2 year trials indicates that there haven't been results warrenting news or change in protocol. So I stopped after one year and have been fine.
Anyway -- there's one more bit of info for you! December is around the corner, so maybe you'll find out more.
Linda

[G. Ann]

Good luck gathering info for Stage 3. Your onc sounds engaged and that's great. I hope you come up with a good plan.

On a lighter note, I love your dog's picture! What is her/his name, age, etc.? Pets are so good to help keep our spirits up. We've had black Labs in the past and now have an "Aussie." If I knew how to post a picture, I'd show you "my little guy."

[DonnaD]

Cannon,
Just to add a little more to what Becky said. I went to a Genentech sponsored HerStory last week. The info I got there was the earliest the two year HERA trial would be presented is the spring of 08.

I am finishing Herceptin in Dec. and would like have a continuous treatment if they say 2 years is better. I am already nervous about no treatment!

Love your dog.
Donna

[Cannon]

Hi again - thanks for all the love for my dog - it's actually his name that is Cannon, I borrowed it for my username. He's 7 and a total love. He was supposed to be a guide dog, but honest-to-goodness, he's afraid of cats, so they failed him (they call it "career-changing").

Saw my onc today and he said he would not recommend continuing on Herceptin past a year, with me not being Stage IV, and given the possibility of cardio-toxicity. I got the impression if I had pressed, he probably would have continued a little longer, but I'm pretty sure I'm ready to risk it.

He did tell me that he knew of another drug (for a different disease, not sure if it was even a cancer) that had a similar gene-modifying effect - or whatever it is that Herceptin does - that they could not get enough people to go off for a good A/B test. But some patients did take themselves off it, and they found that the disease did come back.

I asked him if this was a relatively low risk thing to try going off Herceptin, though, since there was a high likelihood that if I recurred, the Herceptin would work again. He did agree with this thinking.

He also told me of a patient he has who has BC, and had a bone met 25 years ago! treated with whatever they had at the time, driven into remission. Had a new bone met last year, and she is back in remission now. He cares so much!

So, I will have my last Herceptin in early December, and then do the scan thing again. My markers have all been normal for a long time.

[chrisy]

Cannon,
Good doggy! Suggest to your mommy that she request regular monitoring of Her2 serum levels - this might help her confidence level once off the Herceptin.

I can imagine it would feel like being naked and exposed, stopping the vitamin H. With the Her2 serum levels under surveillance you'll feel a little less exposed - and have an early warning system to alert you when it's time to push harder.

Glad to see you still have your fighting spirit intact. Don't ever let anyone try to take THAT away.

[Bev]

Hi there,

I would guess the thing to do is wait for the spring results. As linda has said, no news likely means nothing conclusive at this point in time.

Gina, stage 4, has a different take where she has tumor markers done and asks to renew Herceptin treatment based on that periodically,

My best guess would be if your LVF has held steady, it's not a valid argument against Herceptin. Mine inproved during the course. I think Ac is the demon.

My thought is to wait for those spring studies and really scrutinize them for your particular status. The downside is they may delay the release of said studies for another year or two, which would take you to the Gina Plan B.

Hang in there. I truly believe they are going to figure this out soon. Bev

[nitewind]

I, like Donna, will be finishing my herceptin in December and I'm very worried about it. Donna, it looks like our stats are pretty much the same, the only difference is that I had no positive nodes. I know that my onc will not let me go further than one year of herceptin, I've already asked. Sometimes I wish that he was a breast specialist, but he is a general oncologist. I'm so scared about finishing the treatment, I mean, I'll be glad to have it over with but I feel that it's my security blanket. I get the H every week then every third week I see the doctor and get my blood drawn. Just makes me feel like if something was going to happen, they'd know about it early enough.
So, anyway, I'll be done in December then I'll pray for the best.
Best of luck to you, too
Hugs

[chrisy]

Gina has been living with Stage IV for years - and managing it with herceptin only. She monitors this with the Her2 serum test (not tumor markers) and when they start to rise she goes back on herceptin. So she's on and off herceptin as necessary.