Xeloda - hormone-positive + cancer post-neoadjuvant chemo

Mst1985
Mst1985 Member Posts: 5
edited May 2019 in Stage II Breast Cancer

Hi everyone,

My breast cancer is hormone-receptor positive. I finished dose-dense neoadjuvant chemotherapy in November and have had two surgeries, both of which showed residual cancer in my breast and lymph nodes. What my medical oncologist had said before surgery was that if I had any residual cancer after chemotherapy, I would be put on oral chemo (xeloda) for six months after radiation.

I am currently half way done with my radiation and in the most recent appointment with my MO, the nurse told me that I will not be on oral chemo anymore, mainly for two reasons. First, I might not respond well to the oral chemo being hormone-receptor positive. She said if I were triple negative, they would definitely recommend oral chemo. Second, oral chemo can potentially hinder the anti-estrogenic effects of tamoxifen/AI (I'm currently on tamoxifen, will switch to AI after radiation).

I was just wondering if there's anybody out there who have had similar experiences. I'm feeling a bit anxious and defenseless with the thought of not being on oral chemo (which is what I was mentally preparing myself for months!). I might request my nurse to refer me to studies that show what she's said. I was also thinking of going for a second opinion but I'm not sure where to go ((I'm currently at MSK). If anyone has any suggestions, please let me know! I have a month before my next MO appointment where we decide next steps.

Thank you!

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  • Moderators
    Moderators Member Posts: 25,912
    edited April 2019

    Hi Mst,

    We're sorry to hear there's such confusion in trying to make your next treatment decisions. We're sure someone will be by shortly to weigh in with their experience and advice dealing with a similar situation.

    In the meantime, there's some good advice on the main Breastcancer.org site's section on Getting a Second Opinion that could be helpful.

    We hope this helps!

    --The Mods

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  • stephilosphy00
    stephilosphy00 Member Posts: 386
    edited April 2019

    Hi Mst1985,

    I am sorry you were also diagnosed at such young age! I also had residual cancer in my breast and lymph node after neoadjuvant ACT chemo. My onc did let me take Xeloda for 6 rounds after radiation, based on that Japanese study. However, my onc never told me oral chemo can potentially hinder the anti-estrogenic effects of tamoxifen/AI, and I didn't see it was mentioned in that study. Let me know if you have other questions.

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  • poisedandpink
    poisedandpink Member Posts: 66
    edited April 2019

    Hi Mst1985

    I'm also at MSK! I just received my pathology report yesterday. After going through ACT chemo and a mastectomy, I was also found to have residual cancer. My surgeon mentioned I'd be doing radiation and an oral chemo. I meet with my radiologist on Monday and my oncologist next Friday. I'll let you know what my oncologist says. I was certainty in shock to hear I would need more chemo. For some reason in my mind, I didn't even know this was a possibilty. No one on my team mentioend it to me being an option.

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  • Mst1985
    Mst1985 Member Posts: 5
    edited April 2019

    Hi stephilosphy00 and poisedankpink,

    Thanks for responding to my post! I've done some research, talked to my medical oncologist, and also visited another medical oncologist at Columbia. What I've figured out so far is that - Xeloda is typically given to triple negatives. Data shows that they have the best response. The response on hormone-receptor-positives is "uncertain" but that doesn't mean that its not effective either. I talked to my MO at MSK and she agrees. This is why she is willing to give me Xeloda (also because I'm young).

    The MO at Columbia was more firm in her opinion than my MO at MSK that hormone-receptor-positives do not benefit from Xeloda. I also found out about this trial - S1207 Hormone Therapy With or Without Everolimus in Treating Patients With Breast Cancer (e3) - but if I choose this trial, I won't be able to take Xeloda, so I'm not sure what to do.

    I just sent my MO at MSK a message asking for her advice. The closing date is May 1 and I have to decide asap. For some reason, MSK doesn't have this trial, which means I'll have to transfer my oncology team etc, too, (not sure if I can divide my care between two hospitals).

    Poisedankpink, let me know if you have any questions!

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  • poisedandpink
    poisedandpink Member Posts: 66
    edited April 2019

    Oh interesting that it's not used typically. I assumed also because I'm young (I'm 33) I'd be on Xeloda when my surgeon mentioned an oral chemo pill unless he was just talking about the hormone blocker. I've been stressing since yesterday after getting my pathology report. My oncologist is out of the office so I can't speak to her sooner than my appointment next Friday. Keep us posted on what your MO recommends. I'm interested to hear.

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited April 2019

    Mst, for what it's worth, being grade 3 and young, I would do the course of Xeloda. Chemo has probably suppressed your ovaries temporarily — has it? You can do the Xeloda then go on Tamoxifen (or ovarian suppression plus tamoxifen or aromatase inhibitor). Everolimus aka Afinitor I would not be eager to take. I seldom see anyone for whom it works great, and it can have some really bad side effects. One of our members called it “aPHONYtor". I don't know why oncologists like it so much except maybe a mistaken belief that since it is a targeted therapy and not chemo it will be easier. Not necessarily. This is obviously just my (educated) opinion, but maybe it will give you things to discus with your oncologist — and not just the nurse.

    There is a thread for those in your situation. Search for “Xeloda early stage”. (Sorry having trouble posting a link.)

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  • poisedandpink
    poisedandpink Member Posts: 66
    edited April 2019

    Hi Mst1985 ,

    I wanted to give an update. My Oncologist at MSK put me on Xeloda for six months after I finish radiation. She felt I would benefit from it. She did not feel it would hinder Tamoxifen. She has me on Tamoxifen plus monthly Lupron shots. I started my Lupron shots already and will be starting Tamoxifen during radiation if the radiologist allows it - waiting to hear back.

    I hope this helps!

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  • Mst1985
    Mst1985 Member Posts: 5
    edited May 2019

    Hi poisedandpink,

    I have an update that might be huge for people like us (non-metastatic hormone positives with residual cancer after neoadjuvant chemotherapy).

    I went to get a second opinion at Johns Hopkins and met with an oncologist who told me the findings of an important trial (PENELOPE-B) is being presented on June 1 at the American Society of Clinical Oncology meeting. If the study is positive, we might be eligible to take CDK 4/6 inhibitor which according to my current MO has "revolutionized" how ER/PR+ metastatic patients are being treated. The Hopkins suggested I wait until June 1 before deciding on taking Xeloda.

    I talked to my MO at MSK and she was more than happy to wait for the trial results.

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  • poisedandpink
    poisedandpink Member Posts: 66
    edited May 2019

    Oh this will be interesting to hear whats presented!

    I wouldn't be starting Xeloda until mid July after radiation. I'm also in the process of switching oncologist after a few negative experiences with my old one. So I'm also interested to hear what my new oncologist says.It seems even at MSK there a differing opinions on which way to take treatment.

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