When is enough Herceptin for early stage?

kimber · 05-11-2006, 10:21 AM

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 · 05-11-2006, 11:26 AM

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 · 05-11-2006, 11:44 AM

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 · 05-11-2006, 12:21 PM

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

Cathy

saleboat · 05-11-2006, 12:38 PM

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 · 05-11-2006, 02:19 PM

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 · 05-11-2006, 02:43 PM

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

Lauriemn · 05-16-2006, 04:39 AM

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 · 05-16-2006, 09:09 AM

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 · 05-16-2006, 06:25 PM

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 · 05-17-2006, 11:53 AM

Hi,

Stage 1, node neg, ER/PR-

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

Olivia

rinaina · 05-17-2006, 12:21 PM

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