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Femara-to continue or not...

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  • limnogal
    limnogal Member Posts: 100
    edited December 2019
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    i discussed continuing on femara or not with my MO last week. His opinion was that continuing on femara was getting me (with my personal tumor characteristics) at best a 1-2% reduction in the probability of a recurrence/progression. He said the reduction was greatest during the first three years, and since I was past that, it was really up to me. We decided on a two month trial of exestamine, If that goes ok, I’ll continue for another year. If not, I’m done.

  • jessie123
    jessie123 Member Posts: 134
    edited December 2019
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    I've been reading about testing for circulating tumor cells. I first heard about this from one of the ILC video meetings. Anyway, the lady in the video said that even if an early stage patient has circulating tumor cells after surgery there is nothing that can be done about it --- however, it helps with prognosis. So I'm thinking the test could help in the decision to stay on or even start the pills.

  • dtad
    dtad Member Posts: 771
    edited December 2019
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    Yogatyme...I've always thought it was contradictory that weight loss and exercise reduce recurrence rates by 40-50 percent but both are difficult to do on anti hormone therapy, specifically aromatase inhibitors. Obviously doing both would be ideal but very few of us can accomplish that. The reduction of recurrence rates are similar but there are no side effects of diet and exercise. You are not alone in feeling judged for refusing anti hormone treatment. I was so harshly judged that I left the community for several months. The reason I came back was because I got so many PMs and Emails asking me to. I decided I wasn't going to be intimidated by something I firmly believe in. IMO we need to speak up for better treatment options and diet and exercise should be encouraged. Good luck to all navigating this complicated disease.

  • Yogatyme
    Yogatyme Member Posts: 1,793
    edited December 2019
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    Thanks dtad! The way I see it, the side effects of diet and exercise are all positive. I’ve been doing a minimum of 30 min of rebounding daily and eating really well and I feel great. Lots of energy, improved mood, etc and have no regrets about my decision. I have several friends taking an AI and they tell me exercise is very difficult for them. By refusing an AI I am risking a recurrence of bc. Taking it I risk many more issues, most of which affect QOL and I’m willing to play the odds.

  • mortmain
    mortmain Member Posts: 25
    edited December 2019
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    Hello all.

    I'm struggling with this decision myself.

    When I was first diagnosed, the standard-of-care for my type of cancer was 5 years on an AI. Shortly after, the standard increased to ten years.

    I started with Arimidex, experienced the standard stiffness, joint pain. After a couple of years I switched to Femara, which seemed to help, but with it came weight gain. Lately, nighttime hot flashes have become ferocious (enough already! WAY worse than menopause), a meningioma (likely benign) was found during an MRI, have lost my sense of smell and taste almost completely, was recently diagnosed with full-blown osteoporosis, and woke up a month ago with a painful left knee that makes stairs almost impossible.

    My theory has long been that AIs age us prematurely (I'm sure I didn't come up with this myself). Some of my complaints could be age-related, or incidental, but they don't run in my family, besides I like blaming almost everything on the drug.

    So, coming up on 5 years. To stop or not?

  • mavericksmom
    mavericksmom Member Posts: 1,259
    edited March 2020
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    mortmain, looking at your bio I wonder why you ever tried it in the first place....yes, I do, because this has become standard protocol. I refused Tamoxifen in 2003, so glad I did because there is no doubt in my mind that I would have had severe liver issues from it. I took Letrozole for six months after my mastectomy and recovery this year, but like you started getting side effects. I stopped it in October and will NEVER go back on it.

    My IDC in 2003 was 1 cm, 0/24 nodes, chemo, rads. December 2018 ILC 1.4 cm, nodes previously removed, Letrozole 6 months

    I just lost a friend to chemo given pre-surgery. Treatments are what they are, it's up to us to process what our doctors tell us and decide for ourselves what is best for us! We know our bodies better than the doctors do. They don't have to live with side effects. Remember, AI is given most often for hypothetical reasons. Many of us, like me with my IDC, are cured of the cancer without extended treatments.

    The choice is difficult but do what your gut tells you to do and don't look back. There is no doubt that AIs don’t need to be given to every woman, but there is no test to know who will and who won’t need it to prevent cancer from returning, so they recommend it to everyone with breast cancer.


  • peaches1
    peaches1 Member Posts: 53
    edited December 2019
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    I am on letrozole, and yes I do have SE such as muscle and joint pain and weight gain, but when I attended a weight loss group at the Cancer Wellness Center for 6 months a few years ago, I lost 15 pound, but I had to work at it, and I was able to exercise, and exercise helps with the muscle and joint pain. When I went somewhere that had a lot of forbidden food, I would just allow myself one cookie or whatever, and then I would help myself to the healthy stuff on the table like fresh fruit and veggies and shrimp. I haven't been as careful, and I gained back some of the weight. I need to start exercising again.

    The last time I saw my MO I mentioned about the muscle and joint pain and weight gain on the letrozole, and he did not even address the joint pain, and he said for the joint pain he was putting me on a supplement. He is shy and is a man of few words. When I got the post visit summary, I noticed he was putting me on fish oil. No I haven't started taking it yet. I am not 100% convinced that it will work.

  • [Deleted User]
    [Deleted User] Posts: 0
    edited December 2019
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    Mortmain, your dx is similar to mine. I am scheduled to see oncologist Jan 3rd. Surgeon already suggested that onco will prescribe AL. (I start 16 sessions of rads also in Jan). After reading so many posts about SE I am leaning towards not starting any. I agree with you that these drugs do seem to increase aging. I feel like I will be taking poison if that's not to dramatic to say.

  • GiddyupGirl
    GiddyupGirl Member Posts: 196
    edited December 2019
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    peaches1 - actually the fish oil does help at the right dose and if you are a vegitarian then there is an omega 3 that is vegie safe. Also magnesium works well for the muscle cramps. Hope things improve. I only take the AI every other day made my Onc grumpy but my body seemed to be a bit better with it.

  • mortmain
    mortmain Member Posts: 25
    edited December 2019
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    Update on quitting Femara. Since I last wrote, I've had multiple PT sessions to help me strengthen my leg for stairs. I also saw my oncology surgeon for my yearly visit, and I mentioned my hope to go off Letrozole and my reasons. Without spending a lot of time on it, she pointed out that my complaints could be from age (I was diagnosed with Osteopenia before my cancer dx), and that SEVEN years is the newest standard of care. She stated that my safest course is to continue to the end.

    Despite my big talk making the medicine the enemy, the thought of recurrence terrifies me, and I'll probably continue.

    I do have a postscript on Anastrozole, which I was on for some years (perhaps I should post this on that forum). This past year I became aware of having lost my sense of smell and taste and in retrospect realize I had marked changes four years ago, and because of the coincidence of taking the medication I began looking into a link. My MO knew of none, but the other day I found this on the drugs.com site:

    Nervous system

    Very common (10% or more): Headache (18%), depression (13%), insomnia (10%)

    Common (1% to 10%): Dizziness, anxiety, paresthesia, hypertonia, cerebrovascular event (cerebrovascular accident, cerebral ischemia, cerebral infarct), somnolence, confusion, nervousness, carpal tunnel syndrome, sensory disturbances (e.g., taste loss and taste perversion)[Ref]

    https://www.drugs.com/sfx/anastrozole-side-effects.html

    What do you think? I feel vindicated, even though I miss these senses sadly.

  • GC6
    GC6 Member Posts: 2
    edited January 2020
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    Exemestane and goserelin, yes or no? My second opinion recommended this hormone treatment instead of tamoxifen. HELP

  • magari
    magari Member Posts: 335
    edited January 2020
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    GC6 - I'm guessing that you are premenopausal? You may find this article helpful. https://www.breastcancer.org/research-news/aromasin-plus-ovary-suppression-better

  • mortmain
    mortmain Member Posts: 25
    edited January 2020
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    KIDI919:

    I am interested in what you eventually decide regarding AI therapy.

    This last holiday, yet another of my friends was diagnosed with our kind of cancer (this makes four of us, one each year!) and she is in line for AIs. Like you, she is considering not starting. She is a nurse and a nurse educator, so I feel that her decision will be well-researched. She says her impulse is to err on the side of quality of life.

    And I can understand this perspective. While I am grateful that effective treatment exists, my litany of seemingly random but steadily growing secondary complaints feel like sucker-punches.

    I'm interested in what your researches turn up.

  • [Deleted User]
    [Deleted User] Posts: 0
    edited January 2020
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    Mortmain: I haven't decided. My latest thought is maybe one every other day? I'm afraid of the side effects. My bone density was so so. I'm small boned and smoked the last 40 yrs, so I'm thinking about bone Fx. Plus I don't want to feel like crap. I see gyn dr in Feb so I'm going to ask her opinion. Also want to review w ON the benefits/risks again when I see him in March. I am sick of thinking about all of it truth be told. I am sorry to hear you have another friend w BC. It sucks. Will let you know what I decide.

  • jessie123
    jessie123 Member Posts: 134
    edited January 2020
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    My surgery was almost a year ago and I haven't started the pills yet. My biggest fear is Osteoporosis. I would try the drug if it wasn't for the bone issue since some don't have body aches. Both of my friends never got the body pain, but both developed osteoporosis from the drug. Not taking the pills worries me all the time --- so I have decided that I need a better prognosis on recurrence. There is a test (circulating tumor cells) that determines just what the name implies -- do we have tumor cells in our blood. Most early stage patients do not, but a percentage do. Those that do are at greater risk of recurrence. Insurance doesn't pay for this test so I will privately pay --- probably around $600.00. If I do have the CTS's I will certainly start the pills immediately. Instead of having every single breast cancer patient who is estrogen positive take the pills it seems that they should at least attempt to determine our future risks.

  • magari
    magari Member Posts: 335
    edited January 2020
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    For those who are afraid to even try the AI recommended to them, please read a few pages of the Doing Well on AIs thread. https://community.breastcancer.org/forum/78/topics/854403?page=41#top

    Jessie - Your oncologist should be able to provide you with your personal risk of recurrence and what benefit an AI will provide. There's also an online calculator you can use to get some idea on your own.

  • jessie123
    jessie123 Member Posts: 134
    edited January 2020
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    Magari --- Thanks. My chance is low according to my doctor and the online tests. However, I'm ILC and most trials and the online tests are tested using mostly IDC patients. Since ILC represents only 10 to 15 percent of patients we don't have a lot of research on our side. Some are even questioning the Oncoscore for ILC patients. So I think the circulating tumor cell determination will give me a good idea -- although it may scare me to death.

  • kickin-cancersbutt-2014
    kickin-cancersbutt-2014 Member Posts: 17
    edited January 2020
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    So I'm at the 5 year mark after chemo & rad I was on Tamoxifen for about 3 years and have been on Femara for the last 2. I just saw Onc today and had questioned about hairloss/thinning. He said that is a side effect for Femara but didn't offer me much help for it, except to take Biotin which I have been taking in my multivitamin. (also no bone pain, osteopenia first year and last scan showed osteoporosis) So just wondering anyone who stopped Femara prior to the 10 year mark, did you regrow hair?

    To combat the weight gain and to lose weight I had gained over the last 10 years I went on Keto and omg dropped 45 lbs. I am in a holding pattern and have truly made this a lifestyle change. I absolutely love it. I do exercise about 3 times a week which mostly just consists of walking like 1-2 hours or biking.

    Also, noticed someone stated femara causes loss of smell, also eye brow & eyelash loss but I had previously attributed these to chemo. Do these return after quitting Femara?

    I have decided to go the distance as initially diagnosed Stage 3a with 19/22 lymphnodes positive, but just wondered whether I will have to accept all these side effects will stay permanent?

  • mortmain
    mortmain Member Posts: 25
    edited January 2020
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    kickin: I have some of the same questions you have about whether the side effects we have experienced through our treatments ever reverse themselves once the treatment stops.

    When I ran the idea of stopping Femara after I hit the five-year mark (coming up soon) and mentioned the side effects I have been experiencing, my surgical oncologist suggested that some of these side effects could just be normal effects of aging given that I'm 64. She told me the latest standard of care is seven years.

    Does anyone have any thoughts on this: is it aging or is it AI?


  • limnogal
    limnogal Member Posts: 100
    edited January 2020
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    Mortmain- I took a 6-8 week vacation from femara about 3.5 years after I started. I am happy to report that that most of he aches and pains cleared up during that vacation. I can’t say much about hair thickness, but I did seem to be losing less hair. I also lost 15 lbs (but I also did a 10 day walking vacation, so that could have helped a tiny bit there). After being back on femara for a month, then switching to exesteme (sp??) for 2 months, the joint pain is back.

    I did just fine for the first couple of years on femara the real side effects didn’t start for me until year 3. Of course, your mileage may vary.

  • magari
    magari Member Posts: 335
    edited January 2020
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    I have switched from Arimidex to Aromasin to Femara and recently back to Arimidex over the last two years, with 2-week breaks each time.

    These breaks haven't been long enough for me to notice any diminished side effects, but the SEs have varied with each med. I have hot flashes and achy joints on all of them, managed with low dose Effexor and Gabapentin for the former and exercise for the latter. Both Aromasin and Femara caused rapid weight gain; thus my return to Arimidex.

    Your mileage may vary, but it's worth trying a different AI if the one you're on is causing unmanageable side effects. My MO thinks that just switching it up may work as a type of "reset", at least for some people.

  • Abbidoodle
    Abbidoodle Member Posts: 21
    edited February 2020
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    Hi LimnoGal. My tumor was a grade 3 and only 7% estrogen driven. Oncotype was 41 and labeled triple negative. Sounds like we're very similar. I started Letrozole right before Christmas, 2019. I thought I was doing fine on it, even though I was experiencing some joint pain. About a month later, I noticed joints in my fingers, knee, foot, shoulder, and neck were really getting painful. I stopped taking it a few weeks ago, and will see my MO next week. I have also developed a trigger finger. I know my MO will want me to try another one, but with only 7% estrogen driven, I think I'll take the chance. Too much pain for me. Let me know what you decide and best wishes to you.

  • Tslaghuis50
    Tslaghuis50 Member Posts: 1
    edited March 2020
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    Hi all, I began with my Exemestane tablets in September 2019. From the beginning I developed terrible pains in the joints of my fingers. In the mornings when I wake up I cannot close my hands. There are other parts of my anatomy which flare up every now and then, but my hands are in constant pain. I am taking all the necessary supplements and ensure that I do aqua exercises 3 times a week which gives me some temporary relief of the pain. I can honestly say that these side effects are more upsetting and uncomfortable than my chemotherapy and radiation. I should be on the tablets for 5 years. In the beginning I believed that it would not be a problem and my thinking was that if I could overcome my breast cancer, this would be a walk in the park. I now know differently. If my side effects get worse I would definitely consider stopping the treatment. Let's hope they dont.

  • mortmain
    mortmain Member Posts: 25
    edited March 2020
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    Hello, all:

    I love the description 'mileage' for our individual AI journeys! On the question of whether our bodies, compromised by drug-induced side effects, return to a semblance of pre-AI status once we stop: I wonder how many who get shut of the meds look back long enough to respond.

    Also, I totally remember scanning these forums for a side effect 'recipe' so I could know what to expect, only to find that while there is a certain comfort in certainty, and similarities are common, we each travel our own paths with this treatment. I empathize and agree with those who describe many side effects as drug-induced. They are too common to be attributed solely to old age. I don't consider 64 to be old, at least not since I was 40 :).

  • mortmain
    mortmain Member Posts: 25
    edited March 2020
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    Also, Kickin-cancersbutt-2014, looks like you and I started our 'journeys' at around the same time. The drug-induced weight gain and the disfigurement of my breast hurt my feelings (read vanity) and I wasn't moved to do anything considering all my other side effect concerns.

    Finally, around two years ago, I too started the Keto diet around the same time as I finally scheduled reconstruction. I lost 30 pounds over the course of a year, but my weight crept back up. The calorie count I have to maintain to lose the weight again is ridiculous, but I've rejoined the struggle just now when we are told to stay home.

    My warmest wishes for us all in these bizarre times!

  • windingshores
    windingshores Member Posts: 160
    edited April 2020
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    For those deciding on whether to continue past 5 years, the Breast Cancer Index test can help by giving a risk of distant recurrence in years 5-10 and also yes or not to benefit from extending the AI/

    Also, I just want to add that I had osteoporosis BEFORE starting Femara and after 5 years have still not broken anything. There are meds to take to mitigate bone loss but I have not taken any. Reclast helps prevent cancer too.

    So even without any bone meds, I still haven't broken anyting.

    Tai Chi helps me a lot.