Chemo is confusing, don't know how to begin my research

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LisbethS
LisbethS Member Posts: 145
edited September 2016 in Chemotherapy - Before, During, and After

I had a unilateral mastectomy and found out I'm BRCA2 positive so now need another mastectomy, and ovaries and fallopian tubes removed--surgeon recommends removing uterus too but on the fence on that one. Just got my OncotypeDX results back and it is 40 so now they are recommending chemo so all my surgeries are on hold until chemo is completed. I noticed the OncotypeDX test compared chemo with tamoxifen vs. just tamoxifen, I assume they used tamoxifen because I am pre-menopause but I will be getting my ovaries removed so won't they put me straight on an AI (aromastase inhibitor) instead of tamoxifen? Why doesn't the report show chemo with AI vs. just AI? Should my ordering doctor have told them that i am BRCA2 positive and wouldn't be going on tamoxifen? I read somewhere that AIs are more effective than tamoxifen.

Anyway, I know nothing about all the different chemo drugs and cant figure out how to start my research. The National Cancer Institute has about 62 drugs listed, and when I try to go through the posts on this site there are just too many different drugs everyone is talking about (its like a foreign language). I see my MO on Monday and I want to have some understanding of the different possible chemo drugs so I can ask appropriate questions but am overwhelmed. I'm usually a bulldog when it comes to research, but can't figure out how to even begin. Is there some more common chemo drugs that I could start with?

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited August 2016

    Hi!

    Most breast cancer patients in the US get either AC (Adriamycin/Cytoxin, sometimes followed by Taxol) or TC (Taxotere/Carboplaitin).

    A smaller number of women get FEC (5 Fluorouracil/Epirubicin/Cyclophosphamide).

    I was diagnosed with HER2+ cancer, and HER2+ patients typically get some kind of taxane (Taxotere, Taxol) that they combine with targeted therapies like Herceptin and Perjeta. I ended up doing AC + Taxol/Herceptin/Perjeta.

    The different combos have different side effects and some patients might tolerate one combo better than another. For example, AC can be tough on the heart, so if you have heart problems, maybe TC or FEC is for you. My oncologist monitored my heart very carefully while I was on AC through heart scans (MUGA).

    TC often causes gastrointestinal distress, but most breast cancer patients make it through this regimen. I got mild diarrhea on Taxol, and often wonder if it would have been worse if I'd had the Taxotere regimen.

    RE: hormonal therapy, that typically starts after chemo. You'll have some time to talk with MO about the AI vs. Tamoxifen decision.

    Hope this helps!

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited August 2016

    Hi, Lisbeth. In the trial which validated the Onctotype DX test, they gave the women tamoxifen, but I think it is pretty well accepted that an aromatase inhibitor would be as good or better since they are all anti-estrogens. The majority of the women in the trial were in fact post-menopausal. The main point of the Oncotype test is to answer the question of whether chemo is worth the risk (and it is for a score of 40), rather than to determine which hormone therapy to use. As I understand it, an aromatase inhibitor does show better disease-free survival compared to tamoxifen, but there is some question about overall survival. For pre-menopausal women, ovarian suppression or removal followed by an aromatase inhibitor is a more aggressive hormonal therapy than OS plus tamoxifen or just tamoxifen, and is indicated for the higher-risk patients. See the results of the SOFT trial. By the way, post-menopausal women can use either tamoxifen or an aromatase inhibitor.

    I imagine your BRCA2 positive status could be an important consideration for choosing which chemo and which anti-estrogen to use. It may be that some chemo drugs are particularly recommended for BRCA. I think I read something about carboplatin and BRCA mutations. My advice is be sure you feel you have good doctors who know their stuff, because you don't have time to get that oncology degree. Ask what they recommend and why, then read up on it if you wish. If you are not already at an NCCN center, you could arrange a second opinion consultation at one. You want to be with people who are very knowledgeable about BRCA mutations.

    You might ask if it would be safe to leave the cervix even if the uterus is removed.

    I'm sorry you had to go from lumpectomy to surgeries for BRCA2. Wishing you well.

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  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited August 2016

    Hi LisbethS:

    I agree with ShetlandPony that the use of Oncotype Recurrence Score information does not restrict your choice of endocrine therapy. With a bilateral oophorectomy (because of your BRCA2 status), you would be considered post-menopausal and would have the choice of tamoxifen or an AI. These have different side effect profiles. You can discuss the relative pros and cons of these with your MO in light of your medical history and diagnosis.

    The selection of an appropriate chemotherapy regimen requires the expertise and training of a medical oncologist, so it will be helpful for you to have an initial recommendation from your MO about specific regimens they feel are suitable for consideration in your specific case. You can ask about pros, cons, and side effect profiles, and whether any particular regimen(s) may be preferred in their view, and if so why. That will help you focus your research, and you may also consider a second opinion if you wish.

    Here is more information about the validation studies featured in your node-negative Oncotype report and another study with an aromatase inhibitor, if you are interested.

    In the node-negative ("N0") Oncotype report, the first section of the report provides your Recurrence Score and the average 10-yr distant recurrence risk with 5-years of tamoxifen that is associated with that particular Recurrence Score (to the left of the graph). This information comes from the results of Paik 2004, which was an Oncotype validation study that used archived (stored) tissues for Oncotype testing that were from node-negative patients who participated in the NSABP B-14 trial ("B14") for whom long-term distant recurrence data was available. The first graph in the node-negative report is based on Figure 4 from this study, which illustrates the relationship between Recurrence Score and 10-year distant recurrence with 5-years of tamoxifen alone. The NSABP B-14 trial was a tamoxifen trial, so the patients had received 5-yrs of tamoxifen.

    Paik (2004): http://www.nejm.org/doi/pdf/10.1056/NEJMoa041588

    The second section of the node-negative report concerns the potential benefit of adding chemotherapy, and is based on the results of Paik 2006, another Oncotype validation study. This study used archived tissues and distant recurrence data from the NSABP B-20 ("B20") trial, in which node-negative patients received tamoxifen alone or chemotherapy plus tamoxifen. See e.g., Figures 4 and 3B.

    Paik (2006): http://jco.ascopubs.org/content/24/23/3726.full.pdf

    Another validation study looked at the test in patients who had received 5-years of the aromatase inhibitor Anastrozole. This study used samples and 9-yr recurrence rates from the tamoxifen arm and the anastrozole arms of the ATAC trial, in node-negative and node-positive postmenopausal women with localized breast cancer.

    "Prediction of Risk of Distant Recurrence Using the 21-Gene Recurrence Score in Node-Negative and Node-Positive Postmenopausal Patients With Breast Cancer Treated With Anastrozole or Tamoxifen: A TransATAC Study"

    Dowsett (2010): http://jco.ascopubs.org/content/28/11/1829.full.pdf

    Best,

    BarredOwl

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited August 2016

    Hey, BarredOwl, thanks for supplying the links I didn't, and for the new (to me) information about Oncotype and anastrozole.

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  • LisbethS
    LisbethS Member Posts: 145
    edited August 2016

    Thanks for all the great information. I didn't realize that post-menopause they can use either tamoxifen or AI, good to know for the various decisions I have to make. I had thought for some reason it was tamoxifen pre and AI post. I saw my MO and she wants to put me on Taxotere and Cytoxan every three weeks for three months followed by tamoxifen for five years. UGH, at least I have something to research but she wants me to start next week.

    Thanks Again!

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited August 2016

    Lisbeth -- Many ladies here have done the Taxotere/Cytoxan combo, too. Hopefully, some might chime in to give you the wisdom of their experience. One small warning: there is a very very small chance that you might lose your hair permanently on Taxotere. It has happened to a few ladies in the BCO community, and they feel like they were not adequately warned by their oncologists. As a result, not surprisingly, they are highly critical of their treatment and their oncologists.

    I am premenopausal, and I am doing an ovulation suppresser (Zoladex) and an AI (Aromasin). This is due to the SOFT study, which showed better outcomes on this combo. Good luck to you!


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  • SpecialK
    SpecialK Member Posts: 16,486
    edited August 2016

    This info may help - it is the NCCN guidelines for stage I-II breast cancer. It will show the appropriate chemo regimens for this stage, in what combination, and for how long. I see that your MO has advised TC, and I would recommend both icing of fingernails and toenails during the Taxotere infusion to prevent nail loss, and possibly neuropathy, and check out the thread on cold caps as the risk of permanent hair loss on Taxotere is greater than with other regimens. I am linking the NCCN info, and the cold cap threads.

    The chemo info starts on pg. 40

    https://www.nccn.org/patients/guidelines/stage_i_ii_breast/#54

    Cold caps

    https://community.breastcancer.org/forum/6/topics/735873?page=556#post_4783100

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  • AnotherMichelle
    AnotherMichelle Member Posts: 39
    edited September 2016

    I had my ovaries removed and decided to take the uterus, too, because, according to my gyno onco (who did the prophylactic surgery) and my Onco, the number of potential endocrine treatments increases with the removal of ovaries and even more with the removal of the uterus. (I was also pre-menopausal.) They both talked about "tolerating" AIs and that some women need to try different meds to see what works best for them (with least umber of side effects). If your uterus is out, Tamoxifen is still a possiblitiy if you don't tolerate the other AIs very well. This is whaty they explained to me. Good luck.

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