New Here

[mary ann]

Hello everybody. I just registered here. I have not used a message board before. Looks like breast cancer gets rid of the shyness in everyone.

I am 48 years old. I was diagnosed with HER2+++ ER negative, PR negative, P53 95%, breast cancer after finding a lump myself. I had a lumpectomy with sentinel node biopsy three weeks ago, then axillary node dissection last Monday after one of the sentinel nodes came back positive with microscopic cells. My tumor was 1.6 x 1.3 cm. All other scans and x-rays were negative. My HER2/neu number was 100. They say it's not metastatic yet. At least they haven't found it.

I am scared to death. I want my life back. It was boring but it was mine and it didn't include cancer. Now the oncologist wants to start chemotherapy with Adriamycin and Cytoxan followed by taxotere and wants me to consider a clinical trial that would be the same except for the addition of Xeloda along with the taxotere in one group - I would know if I was in that group or not.

I am apprehensive and don't know what to do about this clinical trial. It seems they are really only using Xeloda for advanced cancer outside of clinical trials. Are any of you who don't have advanced cancer taking Xeloda, or any of you taking it along with taxotere? If so, how are you doing with it?

He is not talking about Herceptin because he says it is not FDA approved except for metastatic breast cancer, but by the time I finish the Adriamycin and Cytoxan it might be approved and I might be able to get it. Should I push for him to give it "off label?"

Looking forward to hearing back from you.

Mary Ann

[anne]

Hi Mary Ann,

It is good you are here to get as informed as you can. I would push for Herceptin. It has showed promising results in the adjuvant (early) b.c. setting. That is interesting that he wants to use Xeloda this early. That is probably because you are er/pr -. I think you should save the "big guns for later", but to be honest I don't know much about Xeloda in early stage. I would have to research it. I have been visiting this board for about a year now and this is the first I hear of it. Maybe someone else will be able to give you more info. But get Herceptin, even if you have to get a new onc. to do it.

Take care,
Anne

[*_joy_*]

Welcome to the best site anywhere for breast cancer Mary Ann. I would also push for herceptin off label. And we understand wanting your old life back. I said that through sobs, yells, mantras you name it. For a long time I flet that way. I don't anymore and I am stage IV and doing great. Give yourself time to feel everything and to let the emotions move through you so they don't get stuck. And you are already doing great things for yourself by becoming so empowered! Keep it up. and while chemo is scary and daunting, it is doable. Take really good care of yourself and integrating complementary care through out treatment and beyond makes a big difference in how we get through these things.
We are here with you.
Love, Joy

[Alana]

Dear Maryann,

It seems as thogh your oncologist might have missed all the recent news about herceptin and how indeed it improves survival rates dramatically for women without metastasis. I would get another opinion, and definitely push for the Herceptin. Read all the articles on this site about the clinical trials which were interrupted because Herceptin cut recurrence rates in half.

[eric]

MaryAnn,

I agree with everyone else, push for the herceptin. While Xeloda seems to be a great drug, herceptin has now been proven to significantly help early stage. There's too many docs out there that are willing to give it off label so don't let that be your deciding factor.

Best of luck with whatever you decide and welcome to this wonderful site. I'm sorry about your situation but I can't begin to tell you how this site has helped me and my wife. Rest assured that there are so many wonderful people here to help you throught this tough time.

Warmest regards,
Eric

[lor]

Hello,

I am also new to this forum. I am 32 stage 2b her2+ and ER/PR +. I am currently doing the AC chemo. One left! Next I get taxol and herceptin. I visited three oncologists before I settled with the one I have now. The first told be that herceptin would be of no benefit for me. My husband and I looked at eachother and just about ran out of there. We had done a lot of research and knew how important herceptin was for me.

I would push for the herceptin or find a new doctor. We drive 100 miles to see the oncologist every three weeks and he is worth it. He is the one that I feel most comfortable with. I hope my story helps you make your decision about herceptin.

God bless!

[mamacze]

A warm and loving welcome to you Mary ann!

Oh the start of this rollar coaster ride that you are on can be dark and uncertain .. . confusing; but you are in the right place...this site is wonderful medicine for you and it is filled with compassionate loving souls who share your exact same problem so feel free to chat with the rest of us mother hens (and guy types too!)...and don't worry, all questions are ok.

I agree with the others; my oncologist (in Hartford CT), said he could now give Herceptin to stage 3's now, so you should persist and go for the herceptin. It is not easy to make those phone calls and get second opinions; but buck up...this is your life and we are all here rootin' for you. News releases 3 weeks ago support your push for Herceptin at your state. Hang in there!

Love and Hugs,
Kim from CT

[*_tami_*]

Hi Mary Ann - my diagnosis was almost identical to your's. After much discussion my onc agreed to give me herceptin off label. I did 4 - AC every 3 weeks and then started weekly herceptins during the 4 treatments of taxotere. Once the taxotere treatments were done I continued with herceptin but got it every 3 weeks instead of every week. I will be done in August. I have Muga scans every 3 months and all is well. In light of the recent great news regarding herceptin, I am extremely grateful to the women on this site that helped me make the decision.

It is hard to believe that it has already been 15 months since I started on this path that I call "My Lump in the Road". I never thought life would become normal again but with the exception of herceptin every 3 weeks and perhaps eating better, life is once again very good and wonderful.

My recommendation is herceptin and muga scans. It gives us one more thing to help hedge our bet that we have knocked out any and all wayward cells that might have gotten past the surgery, chemo, radiation, prayer, vitamins, and visualizations. Whew - it is hard to imagine anything making it past that onslaught - but as we all know it sometimes does.

All the best,
Tami