mbc

susantuffin
susantuffin Member Posts: 1
edited August 2016 in Stage IV/Metastatic Breast Cancer ONLY

Just got the diagnosis metastatic breast cancer in May, without ever knowing I had breast cancer and I went to my doctor yearly. I have been put on tamoxifen as tumor is female hormone driven, I have a lot of pain due to bone metastasis and the tamoxifen is making this worse, any advice for me?? Sorry if my English is not Always correct, I am European.

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  • zarovka
    zarovka Member Posts: 3,607
    edited July 2016

    Susan - glad you are here, sorry you are in pain.

    [Deleted because Bestbird provided more correct information below. I was given the post-menopausal treatment even though I was pre-menopausal because I am 51 and so I am apparently confusing pre-menopausal and post-menopausal treatment. My main point was that we may do things a little differently in the US and that may offer you options to discuss with your doctor if you suspect the Tamoxifan]

    If you would fill out your diagnosis and treatment history in your profile and make it public, it will help us all understand exactly where you stand in this complex space.

    Check out the bone mets thread for more discussion of exactly your situation.

    Hang in there and keep fighting until the pain is managed. This a very important thing with stage IV ...

    >Z<

    ps your english is better than mine. don't let that get in the way of posting.

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  • Bestbird
    Bestbird Member Posts: 2,818
    edited July 2016

    I am sorry to hear of your recent diagnosis. Much of your treatment depends upon whether you are pre- or post-menopausal, given that your mbc seems to be Estrogen receptor positive. A list of hormone therapies as per the uS (I am sorry not to know what may be available overseas) is provided below.

    Furthermore, in the US, if a person has bone metastasis, they are given either Zometa or Xgeva to help stabilize the bone mets and ideally prevent further bone mets from getting started.

    Hormonal Therapy Sequence for Premenopausal PatientsIn general, the sequence of providing hormonal therapy for premenopausal women is as follows:

      • Upon diagnosis, Tamoxifen along with a Luteinizing Hormone-Releasing Hormone (LHRH) agonist such as Zoladex or Lupron are recommended.(LHRH agonists work by telling the pituitary gland located in the brain to stop producing luteinizing hormone, which in women stimulates the ovaries to release estrogen. The drug does not have a direct effect on breast cancer, only on the ovaries. The resulting lack of estrogen interferes with stimulating cell growth in estrogen dependent cancer cells).
      • After progression (when the cancer has begun to grow again despite treatment), ovarian ablation (removal of the ovaries, called "oopherectomy") is appropriate as second-line therapy because it removes a substantial source of estrogen from being produced by the body. The good news is that women who have undergone ovarian ablation may then begin to take advantage of hormonal therapies that are available to postmenopausal women such as Femara (Letrozole), Arimidex (Anastrozole), Exemestane (Aromasin) and possibly Faslodex.

    Hormonal Therapy Sequence for Postmenopausal Patients

    The sequence of providing hormonal (endocrine) therapy for postmenopausal patients will vary, as much of it depends upon what - if any - hormonal therapy drugs the patient has previously taken.Generally, there is a choice of providing single drugs or a combination of drugs, with combination drugs generally precipitating more side effects.Patients are urged to discuss the various options with their doctor and to verify insurance coverage, since it is possible that some of the combination drug regimens listed below may not yet be covered by insurance.

    The following sequence of single or combination hormonal therapy drugs has been lifted from a presentation made by Dr. Maura Dickler of Memorial Sloan Kettering at the 2015 San Antonio Breast Cancer Symposium. Her recommendations are based upon the results of clinical trials as well as her own clinical practice. From: https://sabcs.cmeoncall.com/OnlinePlayer/153

        • Single Agent Hormonal Therapy Sequence:
          • First line treatment should consist of a non-steroidal Aromatase Inhibitor (AI) such as Letrozole or Arimidex
          • Second-line treatment should be either Faslodex (500mg) or Aromasin
          • Third line treatment should be Tamoxifen
          • Fourth line treatment may be either Toremifene (Fareston), Estradiol, Megestrol Acetate (Megace), or Halotestin (Fluoxymesterone)
        • Combination Hormonal Therapy Sequence:


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  • JFL
    JFL Member Posts: 1,947
    edited July 2016

    Hormone therapy, including Tamoxifen, can cause "tumor flare" initially. This could be causing your increased bone pain. Tumor flare is actually a good sign that the medicine is working. I hope it turns out that is what you are experiencing.

    Also, I was in severe pain from bone mets when diagnosed - I basically have them everywhere and I could feel them everywhere and could barley walk. It slowly but surely went away over a series of a few months. I still have some pain a year and a half later when I overwork my back but the pain I do have continues to decrease over time to this day and is nowhere near what I felt in the beginning. My bone mets are still there but have been stable since I started treatment. In the last month is the first time since diagnosis I can flex my stomach muscles to suck in my stomach without feeling rib pain.

    I hope your treatment experience and bone mets pain improve soon.

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  • 3-16-2011
    3-16-2011 Member Posts: 559
    edited July 2016

    susant

    So sorry you are here. I would also recommend the bone mets thred, lots of knowledge and support there.

    I have pain related to bone mets and have learned to take meds the doctors offer. I use heat and ice frequently and both help. I try to have a mid day nap, so I can enjoy my family in the evening.

    Bestbirds info is so helpful.


    Peace

    Mary

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  • Katalysta
    Katalysta Member Posts: 1
    edited July 2016

    Hi JFL !

    I have bone mets also (secondary breast cancer). It is estrogen receptive & I've just been prescribed Letrozole, Ibrance & Zometa....

    What meds do they have you on ? They sound like they are working well for you.

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  • JFL
    JFL Member Posts: 1,947
    edited July 2016

    Hi Katalysta, I was initially on Aromasin/Faslodex/Ibrance and XGeva. After 15 months, my liver mets progressed so I was switched to Xeloda and XGeva. Both courses have helped with my bone mets and I have not yet had bone mets progression, only liver progression, although Xeloda has put that back in check for now.

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  • Longtermsurvivor
    Longtermsurvivor Member Posts: 1,438
    edited August 2016

    Reply to Bestbird's July 18 post above:

    I just shared an excerpt and link to a free full text Medscape article with information about ESR1 mutations in MBC

    Mutations Tied to Outcomes in ER+ Metastatic Breast Cancer

    https://community.breastcancer.org/forum/8/topics/...

    healing regards, Stephanie

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