2nd TNBC, not enough chemo? Lifetime limit of Adriamycin reached

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Camama2
Camama2 Member Posts: 44
edited May 2020 in Triple-Negative Breast Cancer

I was recently diagnosed with TNBC in right breast. In 2005 went through the same thing, same breast. I had TAC the first time around but have been told that I have hit the lifetime limit of Adriamycin and will "only" be getting TC for 4 rounds if no lymph node involvement and 6 if lymph nodes. I had a double mastectomy last week and will be meeting with oncologist tomorrow. Won't start chemo until I'm healed, probably 3-4 more weeks. On another thread several ladies suggested that I ask about Carboplatin being added to TC, which I will ask about when I see my oncologist tomorrow. But is there anything else I should be asking for or about? Do I ask for TC and Carboplatin or the Carboplatin instead of one of them? Just met with the surgeon today and he said that there were no lymph nodes removed because most were removed 15 years ago and he said he wasn't going looking for lymph nodes. But last week when I met with oncologist she told me that they usually take out some lymph nodes anyway and if there is cancer in the lymph nodes I will have 6 rounds. So now that the surgeon didn't go looking for them but the oncologist is relying on treatment choice based on lack of lymph node involvement I'm worried I may not get enough chemo. Must say never did I ever think I would be asking for more chemo, but it's more important to eradicate this cancer now than worry about having more chemo.

Laurie

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  • moth
    moth Member Posts: 4,800
    edited May 2020

    did you already have a torso CT scan? Lymph involvement usually shows up. I'd ask for 1 esp if the bs didn't take any samples.

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited May 2020

    If no lymph nodes could be checked, I would think you would be treated as if positive nodes were found, especially as the tumor was a large (as I see from another post). Also, I think you should have a PET-CT, or CT with Contrast plus bone scan, and possibly a brain MRI, to rule out mets before you begin treatment, as the results could change your treatment plan. Your situation is complex and calls for a second opinion. UC San Diego Moore’s Cancer Center in La Jolla is an NCCN Center. Or are you already there?

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  • Camama2
    Camama2 Member Posts: 44
    edited May 2020

    Thanks for your response. I did have a CT scan and bone scan. Both were clear. Does lymph involvement show up in these type of scans? The oncologist says that triple negative shows up better in CT/bone scans than a pet scan so they weren't ordering one. Since everything else was clear and I'm not having any headaches they're not doing a brain scan, as that's usually a secondary mets location. I'm okay with that. No I'm not at UCSD Moore's, I'm at Kaiser. I was also with Kaiser on my last go around and LOVED my oncologist. Unfortunately he retired last year (I cried when I saw that). I'll be discussing with my oncologist tomorrow about the lymph nodes. If I don't have confidence in what I'm hearing I may decide on a second opinion.

    Laurie

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited May 2020

    Ok, Laurie, it’s good you got scans and really good they were clear.

    As far as axillary nodes, I understand you may not have many left after the first surgery. When you first found the recurrence, they probably did a physical exam and an ultrasound to see if any were enlarged. That’s probably all you can do. They will just have to proceed with the information available. For my relative with early bc, they attempted a sentinel node biopsy but the tracer did not work. So no information and the oncologist was not happy. But what it means for her is that they proceed with treatment and do not consider skipping radiation or hormone therapy, as they might have otherwise done because of her age and low-risk profile. The details of your situation are different, but my point is, they are proceeding as if there was a positive node, which I agree with.

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  • lifeb4me
    lifeb4me Member Posts: 39
    edited May 2020

    I’ve also had a recurrence of TN and also had reached my life limit of the A of the ACT chemo I had.

    My oncologist decided on 6 rounds of taxotere plus carboplatin. I also got approved for including keytruda, as in the keynote 522 trial. They said taxotere is stronger than taxol and carboplatin very effective on TN. I had neoadjuvant chemo and surgery on April 28th. I had an almost complete pathological response. They only found viable cells in 4mm of the tumor. So I would ask about carbo and getting into keynote 522 trial

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited May 2020

    I had taxotere and caeboplatin too. Not a picnic but a doable chemo-- and effective.

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  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited May 2020

    I had taxotere and carboplatin (along with herceptin). They were both doable. One thing I did for myself was to drink at lease 8-10 cups of water every day for a year. My oncologist wasn't for drinking great, great amount of water, I think because of losing the electrolytes.

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  • Camama2
    Camama2 Member Posts: 44
    edited May 2020

    Thank you everyone for your input. My concern about her choosing treatment based on lymph nodes was incorrect. My oncologist is giving me the same treatment regardless. The decision is 6 rounds of Taxotere and Carboplatin. She said that I am an unusual case because she wanted to go neoadjuvant chemo but because I had already reached the lifetime limit of Adriamycin with my first round of TNBC 15 years ago she wanted the aggressive tumor removed immediately, hence surgery first. Had I had neoadjuvant chemo I would be eligible for FDA approved meds after surgery and chemo. There are currently clinical trials for drugs that are not currently approved for me and will most likely be approved too long after my treatment is complete as whatever I would be taking would need to be administered within a short time after completion of my chemo. She has said that if I am successful in handling all 6 rounds of the treatment she would consider allowing me to have Xeloda but I would have to sign off on it acknowledging that there are not specific studies that support the use of it for my situation. I'm happy that she is open to it and have decided that we will look into that as things proceed. My first chemo (for my second time of BC) is June 3rd. Strangely I'm excited, can't move to the other side until I get started. I'm not looking forward to chemo again but I know it's what I have to do to live.

    Laurie

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