one real question and one silly question

[rinaina]

Am I the only her2+ er/pr- stage 1 node negative person not getting taxol with herceptin? I had 4 dose dense tx of A/C and 7 weeks of rads and now getting herceptin, but it seems everyone gets taxol with it. My onc said I don't need taxol but I can't help but wonder. Okay now the silly question...how do I get my picture to show up with my posts? I downloaded it to the members gallery but how do I get it to show up next to my posts like so many of you have? Amazing I have time for such trivial things isn't it!!!

[chrisy]

Hi R

To get your picture to display, go to User CP, edit avatar. Then upload your avatar.

I can't wait to see your smiling face!

Serious question - sorry, I don't know, but have you asked your onc under what circumstances he/she would or would not include taxol with the Herceptin. That may provide some insight as to the thinking.

[penelope]

I did not get taxol either. 2/3 oncs said it would only be of 1% benefit to me given that I am node negative. I pray they are right, but often feel like you when reading the boards.

[CLTann]

I am ER/PR positive, HER2 positive, stage 1. It seems like I am the only one not doing chemo, nor radiation. Sometimes I wonder whether I made the right choice after mastec because I see no one here doing what I opted to do. Many times, I saw people with so much problems from the side effects of the treatments and I wondered who is right. Of course, I realize those who do not want chemo/radiation are not coming to this forum. My onc told me that if I opted chemo and Herceptin, my chance of recurrence would have reduced by less than 5%.

Ann

[momdeeco]

I am also ER/PR-, Her 2 +++, node neg. I entered a study and received 6 DD AC and 30 Rads. I went to 3 different doc's before getting the o.k. for Herceptin. I asked about Taxol and all 3 agreed I didn't need it. If not for this Her 2 Support Group, I probably wouldn't be receiving Herceptin. Everyone is wonderful!!! Good luck and I be praying for you.

[rinaina]

Thanks Chrisy for the technical guidance and hopefully I will have my pic up with future posts. So glad to hear there are others who didn't get taxol. Penelope, how did they determine that taxol would only benefit you 1%? CLTann, I can understand why you didn't want chemo and rads but does that mean you can't have herceptin? Momdeeco, sounds like our cases are about the same and I too thank G-d for this amazing forum.

[penelope]

Riniana,
You know I can not remember how she figured it out but when I also figured it out last year I also came up with the 1% using adjuvant online. I also went back and asked the one onc who recommended it and told him about the 1% and he agreed with the percentage. He just made it clear that he was more comfortable over treating me than potentially under treating me. At the time I was right on the border line for herceptin being offered for node negative under 1cm (the tumor was 7mm) and there was an indication that herceptin would not be paid for. I pary they were right!

[Lani]

Adjuvant online did not include her2 as one of the variables in providing the
risk percentages. When the man who started it was asked at a conference I attended, I believe his answer was that there were not at that time good enough numbers for the risk reduction with chemo, rads, etc. for her2+ tumors as not enough labs had been testing for her2 (and not accurately enough) to come up with the figures for large numbers.

The risk reduction for chemo+herceptin vs chemo alone are based on 2 No. American trials and HERA and constitute perhaps 500-6000 patients given Herceptin in the adjuvant setting many of which have not been followed for more than 3 or 4 years. There were few node negative patients in the No. American trials and the HERA patients got a wide variety of chemo regimens (more than two dozen I believe). Chemo was given concurrently in a subset of the No. American trials, Herceptin was given following chemo in HERA trials.

It will be difficult to get these numbers for many years, and if Tykerb is
approved soon and begins to be given in the adjuvant setting as well, this will confound the statisticians even more!

Hope I haven't just confused you...it IS confusing...

The point is, it is far from clear!

[Hopeful]

CLTann, you are not completely alone. I am also Stage I, ER+ PR+ Her2+++ and did not do chemotherapy. I had a lumpectomy and did radiation (33 treatments) with Herceptin every 3 weeks. I am to stay on Herceptin for a year, and have started Femara. My onc is in private practice and is willing to dispense Herceptin off-label. It's funny, I have never been a risk taker in my life, but I couldn't see the trade off in benefit vs. toxicity and quality of life from chemotherapy. I have been fascinated reading about some of the treatments for more advanced disease, where metronomic chemotherapy has been used - lower doses, less toxic, and surprisingly sucessful. If such an approach was available for early stage bc, it would certainly have made me reconsider.

Hopeful

[Bev]

Rianina , I agree it will be difficult to tease out the exact number for recurrence. The way my onc stated it, you reduce your recurrence by 70% with surgery and rads. I think it may be 60% for HER2+. Than you take off 10% for AC and taxol combined. Then another 4% for hormonals and then another 5% for Herceptin. I don't take a lot of stock in the statistics. Think Breast Cancer for Dummies.

In my mind size doesn't matter. That's the only thing keeping you from being higher staged. I don't know lots about medicine, but if taxol and Herceptin are recommended for stage 2, why not stage 1?

Also I've read some studies for other cancers that say taxol sensitizes the cancer cells for rads. Also taxol and H are a great synergy.

If your path says grade 3, or 7 thru 9 on Bloom Richardson scale, moderately to highly differentiated, I would ask the onc. why not?

Some people do get great pain from taxol. I dodged that bullet. No problems. It's a fair question to ask.

Best of luck, BB