Herceptin

[Phyllis]

Hi,
I am a node negative survivor since Oct 30, 03. The tumor was 2.8 cm, Her2 Positive 3+, extensive lymphatic invasion in the breast with large area of necrosis. After a mastectomy, I did AC followed by Taxol. Chemo was fininsed in June, 2004. One oncologist suggested I get on with life & if the BC returns, treat it then. My oncologist said that if it were her, she would take the Herceptin now.

Phyllis

[Karen]

I am stage1, node negative, 1.3cm tumor, grade 3, no vascular lymphatic invasion, Her2+++, er/pr+ and I am taking Herceptin. As a matter of fact, I fought to get it.

Karen

[Bert]

I am stage I, node negative, ER/PR negative, HER2/Nue+++ and I'm taking the herceptin. From everything I've read, it really reduces the rate of recurrence and is quite an opportunity that wasn't there even 6 months ago when I finished chemo. Anything that will reduce recurrence rates, I'm all for, expecially if it has low rate of side effects. I can't tell I'm even taking the Herceptin as far as side effects go. Good Luck. BERTA

[Rhonda4]

Someone in another posting put it best. Breast cancer is like Russian Roulette. 10 chambers, 9 in the chamber and for everything we do to fight it, remove a bullet...Herceptin is another. I was dx 2/1/05 w/ Stage 1, Grade 3, node neg, ER/PR-, Her2+. Partial mastectomy on 2/7/05, finished 6 rounds of dose dense TEC (Taxotere, Epirubicin and Cytoxan) on 5/18/05, 33 rads on 8/1/05. When I originally saw my onc he said that he wouldn't do Herceptin as I am "weakly" Her2 but, 2 weeks after rad, told me that he was proposing a year of it every 3 weeks. Go for it.

Rhonda

[Janet/FL]

I am node negative, 9mm IDC, Her2 +++, lumpectomy 12/2004. Refused A/C chemo as wanted Herceptin added at least afterwards. Two onc's refused. Had 33 rads then in July I found an onc who would give me Herceptin with or without a taxol type drug. I chose to go with Taxotere and Herceptin on a weekly schedule. If I had already had chemo I may just have gone with Heceptin but since I had had none, and studies show it works well with Taxotere, I went with both.
Best of luck on your decision.

Janet/FL

[*_Donna_*]

I am stage 1 no nodes, 1.5cm and .4cm with lumpectomy. ER-PR-but HER2+++. I am doing 4 cycles of A/C every 3 weeks, then taxol with herceptin for 12 weeks, rads because of lumpectomy. I will continue with herceptin to equal 1 year. My onc states most clinical trials are on node positive women and so far everything that works with node positive seems to be working for neg node. Good Luck.

[Lisa]

Do you trust your onc? What does your intuition say?

Back in 1999, I was Stage I, 20 neg nodes and went through mastectomy, ACTaxol, and got on with life. But I remember quite clearly that my case seemed to make everyone "nervous." I didn't know why.

When my mets hit 2 years ago, I understood. It was the HER2 +++. Back in 1999, I couldn't have been given Herceptin, since I had no mets and I had negative nodes. But since then, trials have shown that women with Her2+++ yet with no mets, are having FEWER mets than those without. In fact, there was such a difference, the trials were halted. Thus, you know have the choice.

As I'm sure you've already discovered, BC is nothing if not a series of choices, none of which are black and white. Here's my personal take. Herceptin has few side effects, nothing severe. It has definitely helped women life longer with METS, and soon we'll see if that's true with NO METS, too.

You will have to deal with a port and trips to the onc, but I would consider it insurance. Remember that nothing is a guarantee. Just pick your treatment, go with it, and get on with your life.

Love and light,

Lisa

[Sheila]

Phyllis
I have to agree with everyone else..if you can get it, take it...it seems to be a preventative towards recurrence...I was stage 1 3 years ago, node neg, Her2 3+, ERPR neg, tumor size was 0.7 cm....at that time, Herceptin was only given to node positive women or after recurrence. I received it after I had a recurrence to the lymph nodes 1 1/2 years later and I havebeen on it ever since. The side effects are minimal compared to the benefit. I often wonder if I had been given the Herceptin early on if I'd be a stage IV today!
Hugs
Sheila

[Doris]

Same here. I had to fight to get it. How long are you taking it ? My oncologist agreed to 6 mo. but I think I need it for a year. I am also node neg. , Stage 2.

[AlaskaAngel]

Hi Phyllis. I'm several years out as a Stage I Grade 3 node-negative HER2+++, IDC 1.6. Didn't qualify for the clinical trial when newly diagnosed. Can't have it now by the vague consensus among oncologists.

Does anybody have any clues as to why the national consensus of oncologists at time of diagnosis was that I wasn't at enough risk to be in the clinical trial, but that I was at enough risk that I needed to have chemo with Adriamycin, then rads, and then be blasted into menopause (including ruining my sex life) with hormonal treatment that is uncomfortable for the rest of my life?

Could it have anything to do with the fact that the number of oncologists who have personally been through treatment (OR recurrence) is probably close to zero?

If you can get it, more power to you.

AlaskaAngel

[Cheryl]

Just this morning my onc. told me that she had attended a conference at the University of MN last week where the data from the node negative patients in the HERA trial was presented. This is the first time this group of patients has been singled out for review. She said that the report is that node negative patients benefit as much from Herceptin as the node positive, ie: from the HERA trial results thus far, a 40 some% decrease in liklihood of recurrence. Remeber, the benefit is dependent upon the liklihood of risk. In other words, if a patient has a 50% chance of recurrence, and the reduction in risk is 50% (more like the results from the two US trials where Herceptin was given with chemo instead of after) then the chance or recurrence is reduced from 50% to 25%.

[*_leslie_*]

I have been thinking about this lately, my onc at my last appt.said that he would not recomend herceptin now for me because I finished chemo 4(AC) over 18 months ago. Is anyone node neg. that far out from treatment taking herceptin? thanks Leslie

[joy]

Yes, yes, yes, absolutely yes. If you can take it take it. I was node negative, no lymphatic or vascular involvement, 2.4 cm tumor, clean margins and her 2+++, but didn't know it. I did the A/C,radiation and tamoxifen. That was 5 years ago and i wouldn't have had the option of herceptin because of its approval status for advanced bc only and because my her 2-ness was missed with the IHC test. In 2 years time i became extremely metastatic. i so wish i had had the opportunity that the early stagers have now and i'm so thrilled for those who do. Your experience may never be like mine as no two are alike, it may never come back and we don't want to energize that at all, but i would seriously consider herceptin.

let us know what you decide.
love, joy