When is enough Herceptin for early stage?

[kimber]

I am simply curious about early stagers - I am stage 2. I quit herceptin after 7 months since we have no long term studies on long term effects. I know some of you are stage one and two who would want to stay on forever. Why? If you are younger and God willing have many more years to live, what is the difference with the unknown of "maybe" having the cancer come back or having God only knows.............bad heart, etc.

I mean absolutely no disrespect to anyone. I am simply asking my fellow survivors how they have come to their decisions.

Thanks much! - kim

[nancymarie]

I am Stage 2 and have had Herceptin (currently my only treatment) for the past 6 months. I am going to tell my onc that I want to discontinue further treatments since the side effects are really getting to me - and who know's if a year treatment is that much better than six months, etc. since they really do not know.

-Nancy

[mts]

I'm Stage l; I will have had a year of Herceptin in August. Part of me wants to stay on it, and a part says get off of it... I have felt that Herceptin has been a security blanket for me. Is it working for me? I don't know. But the chances of it working are better than no chance at all. Are heart problems going to be an issue later in life? Probably not -since I have regular MUGA's and we all know the heart will "heal" once off the drug.
Will the itchiness and rashes persist? Probably so, but thats what long sleeves and Benadryl are for.
So, the part of me that says ENOUGH! is still losing over the part that says STAY ON.
Heck, the simple fact that I am HER2 positive is reason enough. I keep a very watchful eye on Herceptin developments and pay attention to the comments made on this website. Its the best I can do. I am 43 with a 5 and 8 yr old... they are the biggest reason I stay on it.

Interestingly, this message board kind of goes in waves of opinion... a few months ago almost everyone on Herceptin was "gung-ho" about staying on it (in early stage)- I think lately, the numerous threads describing side effects have been the undertones of doing without Herceptin.
Like everything else with cancer- the decision is yours. All you can do is be as informed as you can and live with your decision.
Maria

[Cathya]

Perhaps early stagers could take into consideration their ER/PR status when making this decision?

Cathy

[saleboat]

I think that is one of the ‘games’ of cancer survivorship—how do we make rationale decisions and not let fear lead us. For instance, there was a time when if someone on this board had suggested that I drink the Adriamycin in order to increase my chances of remaining cancer-free by one-half of one percent, I probably would have tried it. Even now, I think about all the extra body parts that I have (appendix, gall-bladder, tonsils) that maybe should go, just to diminish whatever chance there is that they could get cancer. And for those body parts that are of questionable use, (uterus, ovaries, fallopian tubes) maybe they need to go too? Then there’s the whole category of ‘redundant parts’-- those organs that come in pairs (kidneys and lungs, most notably) that if one were removed, would reduce my risk of cancer by one-half. (Please note, this is a satire of my cancer-phobic mind)


So yes, we all have to grapple with the available information. And right now, there are thousands of women who count themselves lucky to have had Herceptin in the adjuvant setting, but wonder if maybe they’re not getting too much of a good thing. And because there is a trial in Europe that is looking at the effectiveness of 2 years, well, it sows seeds of doubt in our minds that the one-year that is standard in the U.S. is enough. So we feel caught in the middle, and our Oncs only have the slow, self-correcting grind that is Science to guide them.


This stuff ain't easy.


Jen

[Christine MH-UK]

I'm sticking with the year because all that is known is that a year seems to be beneficial. The reason I would not cut it short was that it is not known for certain that shorter periods are as beneficial. Just yesterday, there was a study of elderly colon cancer patients that showed that there was a critical number of months for them to receive 5-FU, a chemo drug, and if they cut it short then they received no benefit from the chemo at all. So, I'm sticking it out until I have done my year.

I figure that there are some women who have been on herceptin for a long time and that if one year of herceptin is likely to cause problems it will probably be in a long time. However, without herceptin, maybe I wouldn't be around at that point, given a rathr poor prognosis. Maybe I'll just have to start fundraising for the heart disease charities.

[tricia keegan]

I agree with the last comment and also the fact that I am her2 positive and er/pr pos I just want to do everything i can or know about at this stage to try to beat this for good.My year is up in Nov but happy and grateful to have it until then.
Tricia

[janet/FL]

I am stage 1. 9mm ER/PR neg, grade2, Her2/FISH postive. Lumpectomy, 35 rounds of rads.

Two doctors recommended A/C. I turned them down as they refused to also give Herceptin. That was end of 2004/beginning of 2005. I finally began Taxotere/Herceptin (now just Herceptin) in August 2005 and will probably stay on it for 12 months. Since I didn't do A/C, I figure I should try to stay with this--the light stuff--all the way through, though I have considered stopping early.

Good discussion! Will be intested in what the ASCO findings are though as there has been mention of a second year of Herceptin depending on the findings.

Janet

[MCS]

Oh, I cannot agree with more!!!!!

I'm getting herceptin and like others of you have said, i want it for as long as i can and I'm concerned about stopping it in a year. i'm very interested with what asco will say. but also scared that it will say no to continuance and then will i regret it later, when it comes back? where will they be then?

I also feel, like MTS, it's like a security blanket. But that's ok to feel like that. we all have to hold on to hope.

this is very trying

MCS ( maria)

[Maggie]

I, too, agree with Christines comments. I am glad to be on it for a year and in November, we'll see what the lastest news is......Maggie

[MJo]

I get valuable info from this board. I'm Stage 1. As of now, I'm taking Herceptin for a year, as my onc recommends. I read a European study that said 9 weeks of Herceptin might be as good as one year, so I'm taking nine weeklies and then every three weeks. I just read a member's post about her onc observing better results with weekly Herceptins, so I'll ask my onc about that. The reason I'm taking every three weeks is to save two copays and avoid two visits to the Onc. But I'll go weekly if that's better. Science is interesting. The Finnish study said 9 weeks of Taxol and Herceptin is as good as one year; now I read here that other studies are saying two years is better.

[RobinP]

Kimber what an interesting thread you have started. It is really good for us to discuss this as there really is no definitive time frame for Herceptin with various trials on-going.Having said that, I think everyone should educate themselves as much as possible about the trials out there and make their decisions accordingly on a case by case basis. Not one shoe size fits them all. Someone with stage III her2+ bc, for example, may be very inclined to do 1 or even two years of Herceptin. Then again, someone with little her2+ bc, with low risk of relapse, may be content with 1 year of herceptin.If the risk of relapse was extremely small, some may do 9 weeks of Herceptin. Somebody else with early her2+bc may decline Herceptin completely perhaps do to other standing health issues, ig a cardic history. I can't stress enough that every case is unique and deserves individual consideration.

[atdec05]

I am stage 1 er/pr - , her2+ and have been on weekly herceptin since February. I also read about the Finnish trial that included 9 weeks of Hercepin. My onc. said that was not conclusive enough since it was based on a small group (a few hundred) of women. The 1 year and 2 year trials include thousands of women.

But I still felt relieved after I passed my 3-month treatment, because I figured at least I had done as much as the Finnish study.

I'm also torn between wanting to switch to every 3 weeks and staying at 1 week. Have there been studies to show which is safer? I am worried about my heart. My echo results at 3 months were LEF dropped from 65 to 60. My Onc. said there is a margin of error, though my previous 2 echos had both been 65.

Anyone who switched from 1 week to 3 weeks or 3 weeks to 1 week notice any differences?

- Anna

[Lauriemn]

I am stage 2 and have my last herceptin next week ,after being on for a year. I want to stay on it because I have 3 young children. I know it can cause heart problems, but so far, my heart has been fine. My muga actually went up last time. the threat of the cancer returning is more immediate. I know that they have no idea what the long term effects of the Herceptin are, but for me it is a risk I am willing to take, in order to be healthy now and be here to raise my children.


Laurie

[DeborahNC]

I'm Stage 1, progressed from Stage 0 in exactly 2 years. I'm 1/2 through my one year of Herceptin, but am torn about stopping now. The side effects are taking a lot out of my life. My onc says 'stay the course', my surgeon says 'make informed decisions, but listen to your gut.' I stopped the Taxol early due to the side effects and I'm close to doing the same with the Herceptin. My gut is close to winning this debate with myself.

[Tami]

I was stage 2 - 1 positive node. I ended one year of herceptin this past August. There were several on the board that were recommending 2 years but after discussions with my onc, family etc, I just had a gut feel that I was done after 1. Very personal decision. Loved having the port removed after scans were clean in September!

[Olivia]

Hi,

Stage 1, node neg, ER/PR-

Had last Herceptin today - yikes........ 1 year at every 3 weeks.

Olivia

[rinaina]

I am very similar to a lot of you but haven't started my tx yet, will start in a few weeks. I have stage1, grade3, node negative,er/pr negative, her2+ b.c. My tumor was 1.4cm and the margins were clean. I feel I know very little about Herceptin even though I have read about it. A few of you have mentioned to read up as much as you can on herceptin. Can you please let me know where I can find a lot of info on herceptin? Thank you.

Rinaina

[RhondaH]

http://www.herceptin.com/herceptin/patient/index.jsp

Rhonda

[rinaina]

thank you rhonda

[atdec05]

Rinaina - what a nice name. My daugher's name is Raina.

Here's another good site for Herceptin
http://www.breastcancer.org/tre_sys_immune_idx.html

Rhonda - your diagnosis is similar to mine.

Though my treatment differed in that I didn't have Taxol.

Did other stage 1 women not have Taxol? It seems I'm in the minority for this.
I'm stage 1 (2 tumors - total size 1.05cm, extensive DCIS), node neg., er/pr-, her2+, grade 3

I had a masectomy (margins not clean on lumpectomy)
4 DD A/C and am on a year of Herceptin

- Anna

[rinaina]

thanks for the site referal, every little bit helps. actually my name is rina, i just use rinaina as a screen name, don't ask me why...just do. not sure i knew what you meant about 4dd etc.rinaina

[atdec05]

sorry, you develop a shorthand about diagnosis & treatment after a while.


4 DD AC is 4 dose-dense treatments of Adriamycin & Cytoxan.
That means I got treatments every 2 weeks instead of ev. 3 weeks.

[rinaina]

so much to learn and every day I learn more and more thanks to all of you.

[tousled1]

I haven't started my herceptin as yet but will start immediatly after my surgery on June 8. My oncologist is recommending herceptin every 3 weeks for one year. Seems that the one year of herceptin is the current protocol. Who knows when and if this may change. All I know is that I am thankful everyday that there is a drug that can attack the HER2 cancer growing cell.

[rinaina]

Does everyone start with herceptin before chemo? I thought it's chemo first then hereceptin then radiation? So much variance.

rinaina

[atdec05]

Herceptin can be given with certain drugs, like Taxol. It is not given with Adriamycin because that increases the risk of heart problems.


Many women have a protocol of Adriamycin/cytoxan followed by Taxol with Herceptin, then continue on to complete the year of Herceptin.

- Anna