Failing hormone therapy

ann1999
ann1999 Member Posts: 104
edited October 2015 in ILC (Invasive Lobular Carcinoma)

New to posting. This is my second BC with the first one IDC stage 1 (radiation) was 13 years ago. This new monster was a shock to say the least as the mammograms were all negative. So made it through the the chemo, surgery, radiation, one year of Xeloda and then started hormone therapy. Failed Femera, Aromasin and Tamoxifen. Getting worried because the beast was very hormone receptor (95/90%) positive. Wondering if anyone else has had this experience. I can't understand why I get such bad SE and can't handle them.

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  • Racy
    Racy Member Posts: 2,651
    edited July 2015

    Welcome! What do you mean by 'fail'? Do you mean the treatments didn't work or you couldn't handle the side effects?

    Have you tried Arimidex? Your oncologist should be working with you to find a treatment that works for you.

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  • ann1999
    ann1999 Member Posts: 104
    edited July 2015

    Couldn't handle the side effects. Femera - became neutropenic and liver enzymes elevated. Aromasin - severe bone pain, headaches and mood changes. Tamoxifen - severe bone pain, pelvic pain, decreased WBC count. Haven't tried Arimidex but that may be the next one coming. I have a good oncologist but guess just worried I won't be able to handle any of them. Just wondering if anyone else out there had to go without hormone therapy.

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited July 2015

    The abnormal lab values are certainly a concern. The oldest aromatase inhibitor, anastrazole, which may be next for you to try is most similar to letrozole while exemastane (brand name Aromasin) is a little different in terms of chemical structure, etc. however you won't know how it affects you until you try it.

    If you can manage the side effects with other meds like analgesics for pain/headache, antidepressant to even out mood, that may be a doable approach. No one likes taking a ton of pills every day but at least you will know that you gave it your best attempt. Quality of life is a major factor.

    There are some who cannot take anything which might be ok for a small, low grade diagnosis. Another way to look at it is to plug your statistics into the 'cancer math' formula and see what calculations you get.

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  • Moderators
    Moderators Member Posts: 25,912
    edited July 2015

    HoHos, what if you were able to alleviate some of your side effects while taking your hormonal therapy? There're lots of tips on the main Breastcancer.org site's section on Treatment Side Effects which lists each common side effect, with practical advice on managing the side effects.

    We hope this helps!

    --The Mods

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  • Lily55
    Lily55 Member Posts: 3,534
    edited September 2015

    I have stopped both Letrozole and Aromasin for side effects and even my unsympathetic Oncologist actually said donñt take aromasin as it "tortures you so much" as it affected everything, sleep, joints, skin, mood, endless fatigue......I am now into my fourth month of taking nothing.

    I have been prescribed Tamoxifen but feel VERY reluctant to take it as I see that lobular cáncer in particular can be resistant to Tamoxifen and stop it working and also it is not as effective even when it does work.............I understood Anastrozole was very similar to Letrozole, but having read the above maybe that is better for me to try than Tamoxifen......I am not against hormone therapy in principle but I want to LIVE the life I have not just stagger through each day feeling ancient and low..........

    Yes I did try the things to help with side effects..........and they did not really help

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  • mike3121
    mike3121 Member Posts: 410
    edited September 2015

    Hate to but in but this article sounds interesting. Malaria pills are available without prescription and millions of people all over the world take them. It probably wouldn't hurt. I took them when in the army in a hostile tropical climate. For the first two weeks I had, "got to get to the bathroom right now syndrome."

    http://medicalxpress.com/news/2014-06-tamoxifen-resistant-breast-cancer-reversed-drug.html#nRlv."

    My wife has ER+, triple negative metaplastic BC in lymph nodes and a small kidney cancer. Chemo and radiation got rid of the ER+ and metaplastic. Operation scheduled soon for kidney cancer. She's on tamoxifen as aromisen failed her.

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  • beth1965
    beth1965 Member Posts: 455
    edited October 2015

    I am on my 3rd hormonal treatment and doing well. I did not do well with tamoxifen got blood clots in lung and felt crappy then they gave me needles ( i think it was called fulvestrant) for many many months and now I am on anastazole the anastrazole is going well it has been 6 months now I gave it a fair chance I do have some side effects that I deal with but am okay. I gave it a few months chance. I was 98 positive estrogen so they told me it is a very important part of my treatment.

    there are quite a few options out there and also many medications to help with side effects as well so keep your hope that it will work out

    take care

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  • Leslie13
    Leslie13 Member Posts: 202
    edited October 2015
    Other medications can really help side effects. I was already on Gabapentin for neuropathy, so my Dr. increased my dose. He also used 20 mg. Prozac, but other SSRI antidepressants can work. They're advertised for other hormonal problems too.

    I came cold turkey off of HRT and thought I'd die. Now, 6 months later, I don't even have hot flashes. Hormone therapy really did shrink my tumors and may be the best treatment against ILC.
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