ER-/PR-/Her2+ treatment

Aram
Aram Member Posts: 417
edited February 2021 in HER2+ (Positive) Breast Cancer

Hi all,

I am seeing my oncologist tomorrow. I am ER-/PR-/Her2+. I was wondering what questions should I ask? Anything you wished you would have discussed at the beginning?

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  • Melbo
    Melbo Member Posts: 346
    edited February 2021

    The only thing I feel wasn’t really discussed much was the risk that having radiation on the left side could cause heart damage. I found out on the forums here that some women chose a mastectomy so they could avoid radiation because of the risk. I chose a lumpectomy, and while I don’t think I would have chosen differently, it would have been nice to be more aware of the issues from the beginning. Most likely though your MO will direct you to discuss it with your SO or RO.

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  • Aram
    Aram Member Posts: 417
    edited February 2021

    hi Melbo, thank you. I didn't know that either. I am opting for double mastectomy, but I remember the first day my surgeon was talking about radiation even after I told him about my decision. I definitely will ask the question from my oncologist whether I still need the radiation

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  • Melbo
    Melbo Member Posts: 346
    edited February 2021

    from what I’ve learned on the forums is that you generally don’t need radiation if you get a mastectomy. However, if you don’t get a PCR from chemo or have more lymph node involvement than they originally thought, they sometimes have you get radiation no matter what. That happened to one of the women in the chemo group I participated in here

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  • stephincanada
    stephincanada Member Posts: 228
    edited February 2021

    I would ask if you can do Taxol instead of Taxotere. Taxotere was really tough on my hair. It is quite thin on the crown, and my eyebrows and lashes are sparse. But, I didn't do cold capping. If you do cold capping, I think your hair will be okay in th long-term with Taxotere.

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  • Aram
    Aram Member Posts: 417
    edited February 2021

    I saw my oncologist today. I will be given ACTH but instead of Herceptin it is going to be Kanjinti. 4 rounds of AC every 3 weeks, and TH every week. I asked the dr (not the main dr but the resident) if treatments are at the same time, and she said yes. But the nurse told me no Herceptin can't be given with AC because it might causes heart issues. What were your experiences?

    Also the resident told me I most probably don't need radiation.

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  • Melbo
    Melbo Member Posts: 346
    edited February 2021

    herceptin and kanjinti can both potentially cause heart problems. Most of the patients who are on them get an echocardiogram before they start them, and then have quarterly echos after that to make sure your heart isn’t getting damaged. I’m not sure about the mix of AC and kanjinti though.

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  • Aram
    Aram Member Posts: 417
    edited February 2021

    thanks Melbo. They didn't offer you AC? I am wondering why I need AC. Our diagnosis is kind of similar except I have two tumors.

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  • Melbo
    Melbo Member Posts: 346
    edited February 2021

    I also had two tumors, one 2.8 cm and one 1.0 cm, I just never put the smaller one in my profile. My MO went straight to TCHP, which is pretty standard as far as I can tell. I’m clearly no expert of course, so I’m sure there’s a perfectly good reason to go with ACTH

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  • Melbo
    Melbo Member Posts: 346
    edited February 2021

    I was curious and here is an article talking about the two chemo regimes. My 20 second takeaway was that ACTH is slightly more effective (although not to a statistically significant degree), but quite a bit more toxic and ACTH has a higher risk of causing heart issues, which could be an issue when combined with kanjinti.

    https://www.medscape.com/viewarticle/883605

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  • Aram
    Aram Member Posts: 417
    edited February 2021

    Thank you. I will read it and will discuss it with my MO

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited February 2021

    Correct - you can not take adriamycin & herceptin (or biosimilar) at the same time. Both can effect your heart. I had TCHP and when that did not produce a complete response - I had AC after surgery. I did have regular Echo cardiograms all along. It's my understanding that heart problems from Herceptin usually resolve. Heart problems from Adriamycin can be permanent. Fortunately I have no lasting problems.

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  • Aram
    Aram Member Posts: 417
    edited February 2021

    hi MinusTwo, thank you. I hope I don't get those side effects as well. I still don't know why my mo prefers ACTH to TCHP. It seems the second one is a lot more common like 15 to 85. I definitely need to ask him.

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  • Aram
    Aram Member Posts: 417
    edited February 2021

    Here is the answer I got from my MO: 'ACTH VS TCH has been compared in large studies and appear to be equivalent although ACTH has more data supporting it and is the gold standard. TCH is given often but a harder chemo on the body and usually is given to patients whom have heart issues.'

    Now that I have look more into this and know that AC (or A part of it) is called the red devil, I don't know how to interpret this. Is TC harder than the red devil? I am very confused because what I read doesn't match what my dr suggests.

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  • Melbo
    Melbo Member Posts: 346
    edited February 2021

    interesting. Could you maybe ask for a second opinion? I don’t have heart issues and I was given TCHP and got a PCR (complete pathological response) from the chemo, as did most of the women in my July chemo group. The one who didn’t get a PCR was switched to Kadclya, and not AC. Anecdotally, I was under the impression AC was a more difficult regime than TC, and I thought that was what the article I shared said as well.

    It’s a tough situation to be in to question the doctor.

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  • Aram
    Aram Member Posts: 417
    edited February 2021

    Melbo, wow that is great news that you had PCR. I am going to try and get a second opinion but as you said it is very hard to question the dr and from what I have heard he is supposed to be one of the best in Montreal.

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  • Melbo
    Melbo Member Posts: 346
    edited February 2021

    the good news is that either chemo should be really effective at killing the cancer — the only real question is about the side effects. Good luck!

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  • Aram
    Aram Member Posts: 417
    edited February 2021

    Thank you Melbo! I heard about the Red Devil in Robin Roberts book about a week ago. After finding out that is the same as my regimen, it is kind of harder to swallow but as long as it gets rid of this monster I will go through anything

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