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Has anyone quit or reduced dosage of the hormonal therapy?

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  • DorothyB
    DorothyB Member Posts: 143
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    DesertPup, I'm curious about what tests you had done to find out how much the hormonal therapy would help. I am taking tamoxifen and benefit is based on Oncotype report. Not test has been done to see what my body does w/ the tamoxifen.

  • desertpup
    desertpup Member Posts: 18
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    Hi Dorothy,

    I had clear nodes, ONCO suggested no chemo needed (6 weeks radiation) The BCI tests showed low of low and less than 1.6% recurrence and no value in hormone therapies. You can read more at this link. https://www.breastcancer.org/research-news/study-compares-4-genomic-tests

  • windingshores
    windingshores Member Posts: 160
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    I am waiting for my Breast Cancer Index results. My oncologist said they don't do it. I went to the Biotheranostics site, called them, they emailed me some paperwork (also available on the site) and then I took the requisition paperwork to my original second opinion oncologist, who ordered it. I filled out some of the order form myself and also called pathology to see if they still had a certain block, the one that had been tested the most, and then asked the doc to order tests on that same block (this may not make any difference for genomic tests, but call me superstitious).

    The BCI is covered by Medicare and presumably other insurances. If your income is under a certain level they won't charge you at all.

    It's scary but I find that cancer on the back burner still has some effects on me psychologically. I would honestly rather hear high recurrence rate than not hear anything at all.

    As for dosing of Femara, my doc will allow every other day but I never went to that. It's been almost 5 years now. One of my docs allows three months off per year. Another told me I could take two years off, build bone, and then take two more years of meds, if I need more.

    I have a drug insert from the company that makes Femara that says 20% of the dose was effective in studies, so not sure why we all take 2.5mg anyway.

    If I go off, I may taper because I am afraid my body will be flooded with estrogen. Anyone know about that?



  • desertpup
    desertpup Member Posts: 18
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    Fingers crossed for you. I don't know about the estrogen flooding and how that would work but I felt with this test, combined with all the other results and my amazing oncologist's opinion, I feel good about my decision. I'm truly happy I trusted my instincts, pushed for more answers and spoke up. Nobody had even mentioned these tests and the possibilities when I started this whole journey and I thought I'd be on Tamoxifen for 10 years.

  • princessbuttercup
    princessbuttercup Member Posts: 159
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    I am currently struggling with this decision. I was peri-menopausal at the time of diagnosis, so it was tamoxifen for me. After 18 months and a lot of misery on this drug, I developed what is now considered to be post-menopausal bleeding and a thickening of the uterine lining. A biopsy just came back as negative for endometrial cancer, which is a relief.

    But now I am asking my oncologist for another option than tamoxifen. My joint pain is not an inconvenience, it is debilitating. My quality of life is awful in so many ways. I read studies that suggest exercise helps to prevent recurrence as much as tamoxifen will, but if I am in so much pain that I can't exercise, then what good does the tamoxifen do? In my opinion, this combination of side effects (joint pain, cramps, bleeding) is not manageable or acceptable.

    I've made an appointment with my MO, but can't get in for another 5 weeks. Her nurse suggested restarting tamoxifen in the meantime, and I said no go. The nurse suggested that I am putting my health in jeopardy. I'm thinking that 8 weeks of a tamoxifen break is not going to cause a recurrence. So much frustration here.

  • sumomo
    sumomo Member Posts: 23
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    I haven't quit hormonal therapy yet. As AI's side effects were too severe, I came back to Tamoxifen. I thought about switching back and forth, say every three months, between Letrozole and Tamoxifen, but my oncologist doesn't recommend that. Sticking to one is more effective. If I have to choose, Tamoxifen's side effects are more bearable than Letrozole's. Has anyone given up on aromatase inhibitors and settled on Tamoxifen? Is Tamoxifen better than reduced dose of Letrozole?

  • annoyingboob
    annoyingboob Member Posts: 459
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    I took tamoxifen for a month back in 2017. Stopped bc fibroids getting bigger and I didn’t feel well. Now it’s 2020 and I have a recurrent breast ca. Retrospectively i wish I had kept taking tamoxifen and done a hysterectomy. So, ya. There’s that..

  • sumomo
    sumomo Member Posts: 23
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    Annoyingboob, very sorry about the recurrence. Thank you for sharing your experience. I wish you all the best for your treatment.

  • gailmary
    gailmary Member Posts: 434
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    I took letrezole for 4 yrs with fibromyalgia type pain. Then quit till recurrence 6 yrs later. Took letrezole again for 2 yrs till insomnia got too bad.

    No pain second time around.

  • sweetp6217
    sweetp6217 Member Posts: 120
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    Hello all,

    I've taken Letrozole for almost 2 years now, but stopped cold turkey about 3 weeks ago. Prior to doing that, I had a frank discussion with my MO who reluctantly revealed a study she heard about. Papers haven't been submitted as yet (or if they have, it's new). I see her again in 1 week to discuss switching to another medicine. My plan (at this moment) is to just stop. I know that it might be detrimental and am aware of the statistics, but I've had so many side effects that are effecting my life. I'm fairly certain that other choices may bring worse side effects. I'm thinking probably. The decision would be so easy if I didn't have to work.

    I wonder what my MO will say.

  • pippa9555
    pippa9555 Member Posts: 1
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    I stopped taking Letrozole 2 weeks ago and my side effects are still there. Horrible leg pain, back pain, stiffness and tinnitus. Now I have insomnia which I didn't have before. There has to be a better way to cut down estrogen.

  • sweetp6217
    sweetp6217 Member Posts: 120
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    Pippa9555,

    Sorry for your side effects and the new one; that's hard to deal with, I think. As for estrogen, that reminds me of something my first MO mentioned to me during the first appointment that I had with him. Months before diagnosis, I had a nearly full hysterectomy; one ovary and the cervix were left intact. When the MO learned that, he mentioned to me that perhaps leaving the ovary in might have been detrimental. I later discussed that with my OBGYN/surgeon and she did not see that it had much to do with my BC and did not recommend removal of it. Looking back at that decision, she had originally given me the choice to keep one ovary because it was fairly healthy and presumably would assist in not needing hormone replacement after menopause. I had menopause for over a year before that surgery. The hysterectomy was needed because I had a fibrous mass the size of a large grapefruit which thankfully turned out to be benign. Little did I know that I would be diagnosed with BC six months later. Those many months with menopause came with their own problems: insomnia, night sweats, daytime sweats, emotion swings, etc. I tried many OTCs with little improvement.

    Also, it's true that everyone is different and experiences different side effects. The reason I stopped taking Letrozole was because of joint pains, cognitive impairment, back pain, fatigue, eyesight changes, tinnitus and neuropathy which became noticeable during chemo and is now worse, irregular heart beats, and recently, frozen shoulder symptoms. I noticed little change from not taking letrozole until 3 weeks after that last pill. I personally feel better physically and can function better at work. Before, I had to be cautious to keep from making my joint and back pain worse from repetitive tasks and any heavy lifting. I'm also seeing a therapist and am taking medication to help with cognitive impairment.

    If possible and if you have time, would you be able to post your diagnosis and treatments?

    P.S. Because of the frozen shoulder symptoms and joint problems, my MO sent me in for a full bone scan, I also had an upper spine MRI (a previous lower back MRI as well), saw a reumatologist about the pain (which would have helped if I had had the symptoms when I went to the appointment) and many blood tests (to rule out lyme's disease and other things). My neurologist ordered those blood tests since he didn't believe that the shoulder issues were neurological. The MRI and the bone scan revealed arthritis in various areas and some damage to certain spots in the spine (which could account for joint pain below the waist). I went through PT right after radiation treatments but that did little good for me. I wish it had because I've heard it works for others. So, exercise is recommended for me, a little at a time; also simple yoga. Some of my insomnia is alleviated with EFT tapping introduced to me by my therapist. In all, I believe that I have more than a dozen health care professionals trying to help me since I was diagnosed with BC. That treatment is over for now, but I still see those doctors to help with the side effects.

  • edj3
    edj3 Member Posts: 1,579
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    I won't argue for you to continue taking something that's made your quality of life suck. But I will say, now having adult sons, they become a lot more likeable later.

    (I tried tamoxifen, the SEs interferred dramatically with the things I love to do, so no more tamoxifen)

  • salamandra
    salamandra Member Posts: 736
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    jumpship,

    You made it 5 years! That's so great - both a real feat and a meaningful impact on risk reduction. I think you deserve to focus on the positives of that.

  • paknc
    paknc Member Posts: 48
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    I only have my first biopsy results in so far but I assume that endocrine therapy will be pushed on me once I get into my first appointment in late May because I am ER+/PR+. I have said for years that I absolutely would not do endocrine therapy after watching what happened to my Mother's body and mind over time (I always knew that I would get BC because I have all risk factors except for being normal weight and exercising regularly; I have been called back after mammograms for 10 years). But, she never had a recurrence of BC for the 20 years she lived post diagnosis. As with so many things in life, there are pros and cons. I am now to the point of saying that I would consider a low-dose regimen of Tamoxifen for 3 years, there was a trial showing benefits at 5 mg/d for this abbreviated time frame. But, it depends on what I learn once I have more info on my diagnosis. I am still going to try to avoid it.

  • dtad
    dtad Member Posts: 771
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    pippa9555...so sorry you are experiencing side effects from letrozole. Unfortunately it will take much longer than 2 weeks for your side effects to get better. Hopefully they all will but it takes time for your estrogen levels to decrease. You asked if there was a better way. I'm not saying its better but weight loss and exercise have been shown to lower recurrence rates by 40-50 percent. Those stats are similar to anti hormone therapy. I refused it from the beginning for a variety of reasons. I'm not suggesting that for anyone other than myself. It was the right decision for me. I just passed my 5 year mark. Good luck to all navigating this complicated disease.

  • JLBinPDX
    JLBinPDX Member Posts: 71
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    Hi dtad. I've never heard that weight loss and exercise can reduce recurrence rates by 40-50 percent. Can you provide articles or data or some resources to look into this further. This is intriging and could be the motivation I need (although I did lose 18 pounds during the six months prior to my second primary diagnosis so that doesn't quite fit this, I just realized right now). I'm not having too many side effects with Letrozole, but not too happy with it either.

  • dtad
    dtad Member Posts: 771
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    Yes I'll look

  • sumomo
    sumomo Member Posts: 23
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    I'm wondering if there's any simple easy-to-understand comparison of recurrence rates among tamoxifen, aromatase inhibitors and no hormonal therapy. I often hear AI is better than tamoxifen, which is better than nothing, but how much better? I guess no easy comparison available due to many other complicated factors, but I would like to get a rough idea. For example:

    This website says " the recurrence rate in the tamoxifen group was approximately 50% lower than that in the control group during the first 5 years (the treatment period) and approximately 30% lower during the next 5 years"

    and " the aromatase inhibitor was even more effective than tamoxifen, with about one third fewer recurrences during the treatment period (but with little further gain thereafter)" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5734609/

    Does 1/3 fewer mean that 1/3 of 50% for whom tamoxifen didn't prevent recurrence could have benefitted from AI so you can say AI makes the recurrence risk about 67% lower compared to no hormonal therapy?

    Does anyone know any better comparison data?

  • margun
    margun Member Posts: 385
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    hi Dorothy,

    I saw you are her2 positive but there was not chemo in your treatment. I am her2 positive and I’ve been told that that absolutely requires chemo. There is some exceptions?

    Thank

  • salamandra
    salamandra Member Posts: 736
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    Hey sumomo,

    I think part of the reason it's hard to find the info is that the science and application isn't simple.

    For example, an article I linked somewhere recently and can try to find summarized the results as AI+OS being no or barely measurably better for premenopausal women with clinically low risk cancer, but meaningfully better for women with clinically high risk cancer.

    The whole pre versus post menopausal thing comes into play also. My understanding is that pre-menopausal women have more and more serious side effects with OS+AI (so that any cancer benefit may be counterbalanced by other harms), and postmenopausal women have more and more serious side effects with tamoxifen. But those are generalities, and can still vary a lot from person to person - all of our side effects are so varied and different, and some women who have a nightmare on AI can do fine on tamoxifen, or vice versa.

    Then it gets confounded again by individual women's medical situations. How do you balance the benefit of an AI against a particular women's bone density issues?


  • wtfwiththeusername
    wtfwiththeusername Member Posts: 3
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    Sweetpea, can you tell us more about the study your MO was discussing with you? I gather it must contain some negative information about AI's since you decided to stop them. I'm very curious. Thanks.

  • sweetp6217
    sweetp6217 Member Posts: 120
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    wtf: My MO found mention of the study shortly before my last visit with her. If you web search the following, It should be one of the top results:

    Hormone therapy worsens quality of life in women with breast cancer

    News Medical Life Sciences. At the time of this article, the study had not been published yet.

  • salamandra
    salamandra Member Posts: 736
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    sweet6217,

    This seems like it's about that study: https://www.news-medical.net/news/20191008/Hormone...

    I have to say I am so glad that doctor took that study (and cynically not surprised that ti was a woman doctor). It seems like many doctors and people blow off the potential life impact of hormone therapy, and this can lead to a lack of medical and emotional support for patients. I am lucky that the second SERM I tried was much better for me than tamoxifen. But I am still having side effects.

    (I am pre-menopausal, which was the group with less difference between chemo and endocrine in this study - but it is still very affirming).

  • flashlight
    flashlight Member Posts: 311
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    Salamandra, Very interesting article thank you for posting. I am postmenopausal and take Tamoxifen because of osteoporosis. I have read it has less cardiac side effects. I took Fosamax for almost 4 years and could not continue with this bone building drug. I didn't feel comfortable adding another. I'm doing pretty well on 10mg. I do have hot flashes and occasional night sweats even on this dose. Since I had a hysterectomy this past Feb. I no longer have any pelvic pressure. Today I have pretty bad shoulder and neck pain. I changed MO and will be able to see my new doctor at the end of the month. If I were younger I might have made another choice, but now I just want to be able to enjoy the next 10 years.

  • SugarMama64
    SugarMama64 Member Posts: 1
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    I've only been on Anastrozole for 10mo but I am considering options due to the extreme muscle and joint pain and generally feeling blah. I cannot accept Tamoxifen risks with my family history of strokes and my Factor V Leiden. I am miserable with side effects and wanting a better quality of life.

  • sumomo
    sumomo Member Posts: 23
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    Hi SugarMama64, have you tried letrozole or aromasin? Every person reacts differently to different drugs so trying other AI may or may not help. In my case, I found letrozole slightly better than others, side-effect-wise, but not good enough to continue. I believe reducing dose should still be better than quitting entirely, but that idea wasn't supported.

  • moderators
    moderators Posts: 8,052
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    Hi there, SugarMama64-

    Welcome to our community! We can certainly understand, the side effects of treatment can be so hard to manage sometimes. Have you discussed with your doctor what other options are available to you?

    The Mods

  • dtad
    dtad Member Posts: 771
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    JLBINPDX...Sorry I haven't been on the site for a few months. To answer your question about finding articles on how exercise and weight loss can reduce risk of recurrence, I found several articles but I'm embarrassed to say I don't know how to post them on this site. You could just google it and you will see several articles on it. Good luck to all

  • margun
    margun Member Posts: 385
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    I am taking letrozole for 9 months. Joint pain became worse. I do not know if is the rule or eventually gets better. It is worse in my hand and fingers onthe operated side so I do not know if is a combination of all. I have also upper arm discomfort for 3 weeks now. in particular when I stretch. I do not know the cause. Will it go away or not? Is is a sign of lymphadema? I have no swelling.