What do you do if Ibrance and letrozole stop working?

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trojansroy
trojansroy Member Posts: 6
edited July 2019 in Stage IV/Metastatic Breast Cancer ONLY

My wife has Metastatic HR2+ Breast Cancer that has come back after 20 years and does not want to lose her hair. She was diagnosed two years ago and her doctor started her on Ibrance and Letrozole and recently her tumor markers are going up each month. We met with a doctor at City of Hope yesterday who mapped out a plan for her and her Oncologist to follow, but after coming home and researching she is afraid our Grandchildren will somehow be exposed to the new drugs and cause them some sort of issues later in life. Is this even possible? Plus the hair thing?

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  • EV11
    EV11 Member Posts: 127
    edited July 2019

    She should not be overly concerned about exposure to her grandchildren. Unless they somehow ingest her pills they will not get any sort of meaningful exposure through sweat or physical contact.


    Depending on what medications are on the list that the City of Hope docs recommend hair thinning/loss may not be any greater than what she has experienced on Ibrance, perhaps even less (I had thinning when on Ibrance and had wonderful hair growth on my next treatment, Xeloda.)

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited July 2019

    What research did your wife find that shows her proposed tx meds could adversely effect your grandchildren? In the many discussions that go on on bco, I don't remember ever hearing about this possibility (that doesn't mean it isn't true!)

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  • godisone
    godisone Member Posts: 100
    edited July 2019

    losing her hair could be a concern for your wife but what about losing to cancer?(please pardon my language)i am somewhat angry after reading your post, how can she think about such minor things when her tumor markers are going up with every passing month. and, dear, NO! your grandchildren wont be affected by the drugs she take. you, her husband who has supposedly stayed with her all her adult life, should be the first one to get affected,if you sir, are not affected i am sure there is no harm to the grandchildren. the worry about something might happen to them when they grow up , in future is a cause of concern and that is because of the genes that might have been transferred to them through hereditary and inheritance. Jokes apart, i guess your wife is just anxious about the treatment and is making (silly) excuses to escape it. Please support her so that she gets well super soon. my good wishes and please pardon me if i was rude anywhere in the reply. i wish you good luck.

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  • movingsoccermom
    movingsoccermom Member Posts: 225
    edited July 2019

    I just read about a new treatment that adds a lung cancer drug called Crizotinib, that targets the protein which develops resistance to Ibrance. Something to check on perhaps?

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  • BevJen
    BevJen Member Posts: 2,523
    edited July 2019

    There is a current trial going on in the UK (and listed in clinicaltrials.gov) which is also looking at the use of crizotinib along with fulvestrant -- the trial is called: Phase II Study of ROS1 Targeting With Crizotinib in Advanced E-cadherin Negative, ER Positive Lobular Breast Cancer or Diffuse Gastric Cancer. It's still recruiting and set to run until 2022, I think -- it's Pfizer sponsored.

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  • pajim
    pajim Member Posts: 2,785
    edited July 2019

    Trojansroy, your grandchildren will not (cannot) run into trouble with your wife's drugs. If you take aspirin they aren't somehow exposed to it. . .it's broken down in the body. So please disabuse yourself and your wife of that worry. Don't let the kids TAKE her pills.

    Fear around cancer, it's diagnosis, it's treatment effects, etc. is totally normal. It sounds like even after two years your wife has a heavy dose of it. Her fear is expressing itself in worries that can seem off base. I would guess that this isn't the real base of her fear and anxiety. I don't think I'm putting this very well but I hope you can figure out what I'm trying to say.

    I can tell you that the first progression from this disease is just awful. All of a sudden you realize that you really are going to die from this and that the cancer really is going to grow. For me it was worse than the original diagnosis. [Mostly because I wasn't under the influence of a lot of pain drugs]

    May I suggest some counseling? Does your cancer center have a social worker?

    As for not losing her hair, there are treatments, including chemotherapies, that do not cause hair loss. She can stick with them for the time being. Can you assure her that you love her no matter how she looks?

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  • trojansroy
    trojansroy Member Posts: 6
    edited July 2019

    She is extremely vain and the loss of hair like in 1997 is extremely hard for her to endure again. We have all spoken to her about this. If the new regimen of Tamoxifen and Verzenio does not work, she may reconsider her stance on the IV Chemo of Taxol that has been recommended by Dr. Quan, her primary care Oncologist. We will see. She is very angry that this disease has come back and is fighting it mentally.

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  • Nkb
    Nkb Member Posts: 1,436
    edited July 2019

    trojansroy- losing your hair is far more than a “vanity” issue. It is a deep primal issue related to privacy and how you walk in the world. Men can be bald and accepted - bald woman are ill and scary to people - not to mention the fact that everyone knows you are ill and forms an opinion, avoids you, gives you unwanted advice etc. Wigs are hot, and often don’t look natural.

    Good luck with her new treatment

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  • trojansroy
    trojansroy Member Posts: 6
    edited July 2019

    Thanks so much, your reply is almost word for word what my wife has said. Thanks for confirming the same.

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