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Chemo v. Targeted theraphy

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anx789
anx789 Member Posts: 241

Hello, this month I was diagnosed with MBC, pet scan shows bone met on several locations, 1.7 lungs nodule, and met on my chest lymph nodes. I am ER+(98%), PR-, HER2-. Biopsy on my fibula confirmed as cancer. My Onco recommended Abraxane chemo for 3 months and Zometa every month for 5 months.

I saw my 2nd opinion doctor, and he's not recommending chemo as first line of defense. He recommends Faslodex, Kisqali & Zometa first and see if it works. He thinks with broken fibula along with neuropathy from Abraxane will affect my quality of life. I am set to do chemo on 11/4, I'm leaning towards targeted therapy but I also want to fight this aggressively. I am scared of choosing the wrong choice.

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  • cure-ious
    cure-ious Member Posts: 2,756
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    I would go with the second opinion doc for sure, but also if it is just a few bone mets (not clear if the lung nodule is cancer?), they should be including some aggressive radiation there, are you considered oligometastatic? About a quarter of patients who are oligometastatic end up functionally cured after anti-estrogen therapy plus radiation. If you aren't sure, you might even want a third opinion from a radiologist, after dropping that first guy

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,961
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    anx789,

    This certainly is not an easy decision to make. Unfortunately, there is no way to know in advance what the “right” decision might be. When I was first dx’ed, essentially de novo, I was presented with chemo or simply an AI (no Ibrance, Kisqali or Verzenio back then) . My mo leaned toward the AI but my second opinion mo leaned toward chemo although she said an AI would be reasonable. I went with an AI only and thought I could always do chemo if I had progression. I also knew that there was no way to know in advance if one choice was better than the other and was fully prepared to move on to chemo if an AI alone failed. BTW, the idea of limited mets (oligometastases) was new and not well accepted back then so aggressive tx of limited mets was not really considered. Here I am, 11 years later with no progression and I still am on an AI, Exemestane. I should add that I have a single bone met which was treated with rads and I was also on a bone strengthener for about the first 3 years. The important thing to understand is that no one had any way to predict this outcome. I was fully prepared to change course if my choice turned out to be “wrong” . I wish you the best as I know how difficult this is.

  • divinemrsm
    divinemrsm Member Posts: 6,158
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    anx, I’m sorry about your new diagnosis of mbc. Back in 2018, when you learned you had an earlier stage bc, what kind of treatment did you have?

    Honestly, no one, not even doctors, can say if a treatment choice is right or wrong. It just kind of doesn’t work like that. It sounds like you have two good options, where neither one is wrong. It’s a matter of you deciding which route to take. I get your dilemma. I hope you can sort out what you think is the direction you want to take.

  • anx789
    anx789 Member Posts: 241
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    cure-ious, I’ve seen a radiologist Onco who only recommended palliative radiation on my fibula because he thinks it’s widespread to my skeletal plus chest lymph nodes and the lungs. 2nd opinion thinks met is primarily on bone since lungs is not confirmed and I have no breathing issue.

    Exbrnxgrl & divinemrsm, When I was diagnosed in 2018, my cancer was stage 1, grade 3 with Oncotype of 54, I had chemo TC x 6. Usually it’s only x4, I did x6 …i don’t think it worked.

  • nopink2019
    nopink2019 Member Posts: 384
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    Tough decision when it is put to you this way. You don't need to hear about me, but it will give you reference point. With MBC, I started with cancer center that I went to for stage 1. Taxotere & zometa for 1 treatment, developed drop foot, 6 weeks break before Xeloda for 1 treatment, not well enough for 2nd dose. Took 4 weeks off treatment. Onc recommended do same Xeloda again. Same day I had 2nd opinion @another cancer center. Told onc history and she expressed thoughts about what might have gone wrong and what we would do if I switched. I said "you're my Dr". New onc said we'd just start from scratch, not considering those as treatments at all. Couple new scans & started fulvestrant & Kisquali. Later when I went to Xeloda, she reduced the dosage slightly and I tolerated it (also, she noted, I was not so sick when I started). Looking back, I realize 1st onc had no alternative plans, but this one does. I'm so glad I made the decision to switch. My point is, you can't know what is "right". It might be that a couple treatments last years, or you might switch after progression. Go in peace with Dr you trust or treatment you feel best with. But don't feel locked in if things don't go well or you want to change. Good Luck & keep us updated.

  • anx789
    anx789 Member Posts: 241
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    nopink, your old Onco sounds like my Onco. 2nd opinion doctor asked me what is the plan after 3 months of chemo, I replied I don’t know because Onco never discussed it with me. 2nd opinion believe QOL will be affected if I do chemo as 1st defense.

    My chemo is supposed to start this Friday but I decided to cancel and do hormonal/targeted instead. I left messages to Onco to call me but hasn’t called me back. He needs to cancel chemo and request new authorization…it seems no sense of urgency on his part, he’s probably not happy about me changing my mind.

    I’m not sure if myinsurance covers Ibrance or Kisqali. Did you have problems with insurance coverage?

  • nopink2019
    nopink2019 Member Posts: 384
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    When I started Kisqali I was on private insurance. I think onc had to submit some paperwork, but I had no problems and Kisqali was covered under max out-of-pocket. In 2020 I turmed 65 and went on medicare with a supplement and part D plan. Under regular medicare, drugs are totally separate from other medical expenses. My cost was $2700 for 1st month and $600 each month thereafter. Given the reduced cost of all 3 medicare plans compared to my private insurance, only the 1st month was really a diffenence. Each other month, Kisqali cost + medicare plans were about what my private ins cost per month. Since that was during covid lockdowns, I just figured I was paying for drugs instead of having fun traveling etc. Not an insignificant amount and not a fun way to spend $, but I was so pleased to have treatment I could tolerate I didn't dwell on it.

  • vlnrph
    vlnrph Member Posts: 493
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    Anx, from the way you describe the situation, I would have made the same decision. Chemo is probably in my future but I've done well for 4 years on abemaciclib, the 3rd agent in the current group of CDK 4/6 inhibitors along with fulvestrant injections. Zolendronic acid infusions stopped 12 months ago due to a tooth extraction.

    Quality of life is a completely valid reason for choosing a possibly less toxic therapy. In fact, so many of us are living longer and requiring invasive dental work as we age that you might want to ask about Xgeva instead of the cheaper generic bisphosphonate. There seems to be a bigger risk of jaw problems with Zometa.

    Like nopink, I was on private insurance when starting Verzenio. Drug companies may cover your copay bringing the cost down to 0. Now on Medicare, my part D plan charges me $50 for a 4 week supply. Best wishes to you for successful treatment, minimal side effects and a doctor who will communicate!

  • anx789
    anx789 Member Posts: 241
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    nopink - thank you. Onco said Faslodex & Kisqali should be covered.🤞

    vlnrph - thank you, I needed to hear that. I finally spoke with my onco today, he thinks my met is aggressive that’s why he wants 3 months chemo, then faslodex & kisqali. I need to sign paperwork canceling chemo so new treatment plan will not start ynttwo weeks but I will start my Zometa this Friday. He wants me to do Zometa once a month for 5 months , 2nd opinion said 1 every 3 months.


  • aloco1
    aloco1 Member Posts: 2
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    May I ask? What Part D plan are you on? I go on Medicare 01/01/23 and i am very worried about cost of Ibrance.

  • aloco1
    aloco1 Member Posts: 2
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    May I ask? What Part D plan are you on? I go on Medicare 01/01/23 and i am very worried about cost of Ibrance.

  • anx789
    anx789 Member Posts: 241
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    aloco1, I don’t have Medicare but if you go to Ibrance website, there might be some financial help available to you. With Kisqali, they have financial assistance if your insurance does not cover it or help with copay

  • anx789
    anx789 Member Posts: 241
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    aloco1, I don’t have Medicare but if you go to Ibrance website, there might be some financial help available to you. With Kisqali, they have financial assistance if your insurance does not cover it or help with copay

  • nopink2019
    nopink2019 Member Posts: 384
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    anx789 - So what was your decision? How is it going? Not many left on these forums so don't feel like no one cares, It's just that the technical disaster that hit last March has run so many off.

  • anx789
    anx789 Member Posts: 241
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    nopink, I decided to do Kisqali & Faslodex. I’m on my second cycle of Kisqali. My WBC was too low after my first cycle of Kisqali, so I have to take 2 weeks off instead of 1. I’m doing Zometa too every 12 weeks. Thank you for asking.

  • chicagoan
    chicagoan Member Posts: 993
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    I need to search for the post but in the last few days there was something on FB that said that chemo is no longer recommended as a first line treatment for Stage IV breast cancer ER+/HER- because the targeted therapies are proving to be so effective. I'll search for the research but I'm glad you decided to go with Kisquali & Faslodex instead of chemo.

  • anx789
    anx789 Member Posts: 241
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    Chicagoan, you're correct, my second opinion Onco told me that. I did chemo (TC x 6) and it did not work, idecided to try something else.

  • illinois1
    illinois1 Member Posts: 2
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    For seven years I have been on Ibrance. Every year I search Medicare.gov and the cost for me has been about $12000/year with the best Medicare part D coverage. I do not qualify for financial assistance. In 2024, my cost will decrease to about $3200 thanks to passage of the Inflation Reduction Act. It has been frustrating to have people tell me that they have great insurance coverage and all their drugs are paid for by their insurance. It feels like they are implying that my prescription coverage was a poor choice which is totally false. Thanks to the current administration, the cost is finally going to be reasonable and in 2025, no one on Medicare part D will pay more than $2000 for drugs.