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Has anyone quit or reduced dosage of the hormonal therapy?

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  • cassiecanada
    cassiecanada Member Posts: 101
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    thankyou so much flashlight-i
    hadnt read anywhere on these posts
    of any woman my age bracket in
    my position-i am sure they are out there
    just havent found them-so
    what you are saying is very interesting
    to me-
    after much pondering on my own over this
    ( guess i could have called MO as well)-i came to a possible
    conclusion (after rehashing
    my MO visit in march)- that maybe
    it was becsuse there was no reason
    right now to take these organs out if there
    - i see him again early october and
    may inquire about uterine thickening-
    as of right now i have zero side effects
    on this tamoxifin which also seems strange- its only been a couple months
    so I may be eating words ha!
  • flashlight
    flashlight Member Posts: 311
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    Hi cassiecanada, I'll let you know how I make out. The end of August I have my 6 month after radiation mammogram. Hope things continue to go well for you!!

  • Daylightdancer666
    Daylightdancer666 Member Posts: 30
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    Boo =)

    I'm. Bit late to. The party. I'm. From the uk. So not sure if you will have heard. Of the drug precaulib it however you spell it anyway its. Like. Chemo tablet/target based hormone anyway I had horrific side effects and I was taken off.it was only sore lips but they were cracked etc. I was on thst started. Lethrzole and due radiotherapy but my consultant was considering lower. Dose. But last. Time. She saw. Me. She not put me back on it as had tough time.witj radiotherapy after. Effects and wants me. Have. Month to get stronger and have well month so. Will. Keel. You updated when I go back on 28th August xxx

  • Cheerfulcherubs
    Cheerfulcherubs Member Posts: 1
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    hi,

    I’m on Letrozole since 2 months before my bilateral mastectomy. I am having side effects daily.☹️ The drug really interferes with quality of life. I am not willing to stop though

  • exercise_guru
    exercise_guru Member Posts: 333
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    There are some studies in reducing the effect of uterine lining by combining metformin with tamoxifen. You might want to ask about that. It was well tolerated as well even in nondiabetic women.

    they also studied it with AI's but I haven't read the results of those studies. Its atleast worth looking into

  • moderators
    moderators Posts: 8,055
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    Hi Cheerfulcherubs,

    We want to welcome you to our community here at BCO! We know how difficult the side effects can be to manage, but you're in the right place for support as you continue your treatment. What sort of side effects are you experiencing? Some of our members here may be able to offer some advice or insight!

    The Mods

  • MM19
    MM19 Member Posts: 3
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    I've been on tamoxifen just over a year and my liver enzymes are up and down. I am worried about y getting fatty liver (or do I already have it??) and was never told that taking tamoxifen increases the risk for NAFLD significantly, like 30-50%. That's crazy that it was never mentioned to me when other less common side effects like endometrial cancer, are frequently discussed! I am getting another blood test next week and if my ALT and AST are up again, I'm stopping tamoxifen.

    I am 53 and have asked my med onc to see if I was in menopause to I can switch to an AI. He has forgotten to do so twice now. And despite my reading that AIs are better for ILC over the long run, he insists that 'they used to think so, but it's the same as tamoxifen'. I am switching to another (female) oncologist who will actually listen and stay current on these things.

    Being as best informed as possible is the only way I will feel confident that I am making the right choice for me. Good luck making the best choices for you. (((Hugs))) to all struggling with these decisions!

  • flashlight
    flashlight Member Posts: 311
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    Hi exercise_guru! I will ask my GYN about that study. I have my D&C scheduled later this month and I'm not sure if they really can tell how much my lining has thickened until I have this done. I haven't been on Tamoxifen very long.

    Hi MM19! I was diagnosed with NAFLD last March 2018 and then with breast cancer in Nov 2018. I had Right side discomfort and that was why I went to my primary. She ordered an ultrasound and labs. I was told to loose weight and give up starchy foods. When I saw the oncologist NP they never mentioned anything about liver issues with tamoxifen. The more I read about the side effects of tamoxifen the more I was concerned about my fatty liver. I wondered if they even read my medical history. I went back to my primary doctor and she is going to follow my liver function. I will have a blood test every 6 months for now. I'm glad you are changing doctors. Reach out to your primary doctor as well she may be able to do more for you than your oncologist. I am trying a milk thistle supplement. It is made from the seed and not the plant so no estrogen worries. Let me know how your test come out. Wishing you well....

  • MM19
    MM19 Member Posts: 3
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    Thanks for the feedback and well wishes flashlight My naturopath gave me something for liver support, but then the AST and ALT numbers started creeping up so I thought it was the supplements. I stopped them and it continues to go up so it has to be the tamoxifen. The numbers are not through the roof, but double or triple my normal levels right now. I completely understand what you mean about wondering if they even read your history...I just read my last mammogram report and it said 'patient reports a great aunt and second cousin with ovarian cancer'. Ummm no I didn't. I reported that they had breast cancer. WTF. I am also considering changing facilities. BTW, you are only tested every six months while on tamoxifen? They test me every three months for the first two years. I wonder what the standard time between blood tests is for others on this board that take tamoxifen...

    Glad you are following up with different doctors and taking charge of your treatment! Wishing you good health and happiness!

  • Daylightdancer666
    Daylightdancer666 Member Posts: 30
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    Well I was in precliobib and I got nasty side effects of sore lips so my ooncolgist stopped it and said we will try after my radiotherapy. However after my radiotherapy I had bad after effects so I'm having well. Month in my words and yet My calcium up however she may give me. Reduced dose of precliobib.

  • Cow1
    Cow1 Member Posts: 1
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    I have been on Tamoxifen for 3 1/2 yrs. The bone & joint pain began 3 months after I began taking this drug. My doctors don't seem to care; they are just thrilled that this is the only side effect. I am a very or should I say was a very active person. Now I have so much pain in my back, hips, knees, shins & ankles that I want to cry with every step I take. I was hobbling around until 4 weeks ago when my family physician prescribed Alendronate Sodium. 4 days after my first dose, I couldn't sleep the pain became so intense, i want to cry with every step I take & the pain has increased to my upper back shoulder, neck & arms. I can't take enough ibuprofen or Tylenol to relieve the pain. I've tried medical marijuana & acupuncture with no results. Any thoughts would greatly appreciated as I'm becoming depressed & I'm unable to work (self employed)

  • flashlight
    flashlight Member Posts: 311
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    Hi Cow1, I am so sorry to hear about your side effects from the Tamoxifen. I haven't been on it for very long. The doctors don't seem to have much to say unless it is to prescribe another med for the side effects. Before my BC, in my early 50's, I took Fosamax for 3 years. The bone pain in my hips became increasingly worse and my hands started to swell. I am postmenopausal now with osteoporosis and requested Tamoxifen because I did not want to go on another osteoporosis med. Without my doctors approval after having terrible hip pain I lowered my dose to 10mg and have just added an additional 10mg for a total of 20mg of Tamoxifen. So far it is working with some hot flashes and minor discomfort. I don't understand why your doctor put you on Fosamax. Would your oncologist give you a Tamoxifen holiday? I have read on this site where the doctor takes you off it for a few weeks/month to see if the side effects resolve. Or to start a different med. I'm not one for pills, but now I take some supplements like fish oil, K2 with vitD, and magnesium. Wishing you well.....

  • moderators
    moderators Posts: 8,055
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    Dear Cow1,

    We are so sorry that you are having these issues and very glad that you reached out to our members and joined the community. We hope that you will find support and helpful information here that might be useful to you. Please let us know if there is anything we can to do assist you with navigation around the boards.

    The Mods


  • meow13
    meow13 Member Posts: 1,363
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    I quit taking AI drugs due to side effects I did a total of 4 years. My oncologist was on board with quiting that was over 3 years ago. I am ok now.

  • stexas
    stexas Member Posts: 2
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    At first I was put on Femara and those side effects were bad then I was switched to Exemestane and those side effects are worse.

    I tried taking a break from the drugs every few months but still my quality of life was suffering badly.

    I finally gave up in August and have not taken any Exemestane since.

    I see the oncologist on Tuesday to give him the good news.

    I have been taking Prolia injections for 1 -1/2 yrs for Osteopenia and I thought I had developed TMJ but now I think its Osteonecrosis. Severe jaw pain & had to have 3 teeth pulled due to being loose. The pain of this is UNREAL worse than child birth.

    Now I am scared to death about the Prolia injections and I am suppose to get a shot on Tuesday.

    How do we get tested for Osteonecrosis I will ask the oncologist Tuesday to do the testing?



  • Levron
    Levron Member Posts: 7
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    Ive been on Aromasin exactly 2 yrs & today told my Dr I'm quitting it. I am depressed, don't want to leave my house, have constant fatigue to the point that even a towel is heavy to lift. My joint pain moves from knees to shoulders to fingers to ankles etc. I never know what will hurt next & now my hair is shedding like crazy! I may be bald in no time. Bone scans indicate the lack of estrogen is weakening my bones. Quality of life is miserable. Enough. I stopped RX today & will take my chances.

  • thecargirl
    thecargirl Member Posts: 66
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    Hi Levon,

    I quit Arimidex after 2 years, my QOL was all about pain! I started with the shoulder pain, then my hip and thigh which I had checked out with negatives results. I tried everything to stay on this medication but what finally got me was the total joint pain, I felt like I was becoming crippled. I discussed it both my RO and MO and they supported me in my decision . It took about 6 months to feel normal again but I think my joints were damaged . Yes, I do have a diagnosis that is better than most but cancer is cancer and the thoughts of it returning in some form is always in the back of my mind. My PCP has me doing US every 6 months and so far so good. I work out every day and watch my diet and try to reduce my stress. My decision to stop the medication was difficult but my QOL was becoming more and more affected. I am an RN and take treatment seriously.

    surgery 9/23/16 (lumpectomy) followed by radiation

    Arimidex 1/17

    Pure Mucinous 7mm, Grade 1, Stage 1, ER& PR 95% HER2 -, neg nodes

  • KCKCKT5
    KCKCKT5 Member Posts: 6
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    I'm struggling to stop, I'm on Letrozole. It's been 3 1/2 years. I'm about 95% CAN'T GET TO THE 100%. Any one have insight for me.


    Thanks

  • mavericksmom
    mavericksmom Member Posts: 1,158
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    I quit Letrozole after six months, about four weeks ago. I agonized over starting it in the first place and agonized over whether or not to continue. I found that while information from members helped give me information to make an informed decision, and combined with research I did, it was ultimately my decision.

    My MO, while not wanting me to go off of it, respected my choice and told me it wasn’t all or nothing, that if I change my mind I can go back on it.

    As of now I am comfortable with my decision and can’t imagine changing my mind.

    I am not a fan of AIs being given to all who are estrogen positive. I believe many, like myself will do just fine without messing with our hormones!

  • KCKCKT5
    KCKCKT5 Member Posts: 6
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    Thank you for your response and input. It's all so much, I'm 95% convinced I want to stop.

    ~ This drug makes us heavier, in which is where after menopause that's where it's coming from

    ~ Makes me have flare up inflammation in joint and body, not good for Cancer

    ~ Brain Fog not good.

    Just a big decision, and I like hearing everyone's input.

    Thanks Again

  • thecargirl
    thecargirl Member Posts: 66
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    Had my bilateral ultrasound and bilateral mammogram today, everything looks clear. I have been off the arimidex for one year, took it for 2 years…could not take it any longer!

    Lumpectomy 9/23/16

    Pure Mucinous 7mm, grade 1, stage 1, Her2-, neg nodes

  • dtad
    dtad Member Posts: 771
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    Hi everyone...makes me mad that all of you have quit anti hormone therapy due to side effects and poor quality of life. It's frustrating that there are no alternatives. We need to speak up for better treatment options. IMO it cannot be considered an effective treatment when the compliance rate is so low and when so many suffer severe side effects. I'm happy for anyone who is doing well on it but there are just not enough of us. Good luck to all navigating this complicated disease.

  • Yogatyme
    Yogatyme Member Posts: 1,793
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    dtad, two thumbs up!! If the prescribers were required to take AI’s, they might sing a different tune. For me, survival without a decent quality of life is really not better than dying. I beat the cancer bullet 40 years ago and pla to again. There are no guarantees regardless....except ultimately we all die. I don’t mean that in a morbid way, just a reality we have all known most of ours lives.

  • obsolete
    obsolete Member Posts: 333
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    So sorry to hear of all your issues on these drugs. A BIG SHAME on the allopathic medical-pharmaceutical establishment for choosing not to provide any drugs which are more tolerable for the majority of us. But, Congrats to the few who do not suffer on these horrible anti-hormonal drugs.

    Like many of you here, I value "quality of life".

    Tamoxifen had contributed to near-fatal PE blood clots in both my lungs following an auto accident.

    AI's had caused debilitating SE's & complications, so my oncologist took me off anastrozole also. Same with letrozole.

    Dx: Stage-II Mixed Mucinous Carcinoma & Invasive Solid Papillary Carcinoma Gr-II 3cm ER+/PR+/HER2+ (6 yrs in remission)

  • desertpup
    desertpup Member Posts: 18
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    I stopped Tamoxifen in September after becoming truly miserable in every way. Both mentally and physically just a mess of miserable! Since then I feel so much more like myself. My hot flashes were still unbearable so my gyno put me on Effexor and it's lovely. I used to have at least 12-13 a day and night and now maybe 3 total and very light. My oncologist wants me to take some new tests thats tells my risk of recurrence. (onco score was good and nothing found in my lymph nodes or BRCA test) so we'll see! Hope everyone is having a nice holiday season!

  • DorothyB
    DorothyB Member Posts: 143
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    DesertPup - with a positive lymph node, have you considered trying to take 5 or 10 mg / day? I decided the side effects were too great as I ramped up, so have decided to stick w/ 10 mg / day for now. Those side effects (with the help of 1/2 of 37.5 grm effexor pill) are manageable for me.

  • rah2464
    rah2464 Member Posts: 1,192
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    I truly struggle with taking a medication without any confirmation that I am at an appropriate dosing level. These medications are for some of us significantly impactful to how we feel. There aren't enough studies that evaluate individualized dosing. I know that I am an intermediate metabolizer of the CYP2D6 pathway. But what I don't know is if that means that my daily dose of 20 mg is effective. Could I still possibly get by with less? Or do I really need more? I see my Onc today and we will be discussing blood concentration level tests of the Tamoxifen metabolites. This one size fits all approach just seems archaic. Makes me want to start my own clinical trial to find a way to validate dosing levels for an individual.

  • salamandra
    salamandra Member Posts: 736
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    I could not tolerate tamoxifen and my doc wanted to switch me to OS+AI - after months of telling me how she really wanted to avoid that for me and as I was coming to terms with just taking my chances and really really appreciating feeling like myself again.

    Along the way I’ve learned somethings that, IMO, should be better publicized/known:

    • some women get a lot of relief from SE by changing the brand of nolvadex they are taking. (It didn’t work for me, but my pharmacist/insurance made the process of trying pretty painless).
    • Some women get relief from SE if they take a break and then try titrating upwards from a smaller dose. What my doctor (at a top notch cancer research facility) did not even know until I bugged her to find out is that a good pharmacy can prepare liquid nolvadex that I you can take in doses as low as 2mg. (I didn’t try this because by the time my doc got this information, I had decided to try a different direction first).
    • Some oncologists will prescribe toremifene for premenopausal women who cannot take tamoxifen, even though it is not FDA approved for that. That is the course I’m trying. Based on my lay readings of the available evidence, it seemed to me that it likely works at least as well as tamoxifen. My oncologist originally rejected my request twice, but she finally went to consult with her senior oncologist. It turned out that he had come to the same conclusion I had drawn, had in fact advocated to the FDA for approval of toremifene for my use case many years ago, and accordingly currently prescribes it to women like me in his own practice. After that, my oncologist was willing to write the prescription.
    • There is a lot less research than I had assumed about OS+AI for premenopausal women for prevention of recurrence. Two top class studies, one of them fairly small, on two different AIs, with somewhat disconcordant results. Most concerning for me was that some researchers interpreted the results as showing that the efficacy of that route may be connected to a premenopausal woman’s BMI, and that a higher BMI (the article I read said as low as 26, which is the lowest level of “overweight”) can lower efficacy significantly. My oncologist seemed never to have considered this. She said that in her experience in her practice she hadn’t seen this, but admitted that actually there is not enough good data sets/studies on OS+AI for premenopausal women to say conclusively either way. All of that made it easier for me to choose to try toremifene before going the AI route.

    I hope this will be helpful to some.

  • rokel
    rokel Member Posts: 26
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    I have been on Tamoxifen for two years and thought I had no side effects, but I just found out that it's thinning my bones. I had a very bad fracture a year into treatment and after seeing a bunch of specialists over the past year, they determined that the tamoxifen is causing bone loss. I'm very frustrated that my oncologist was not very forthcoming about this. Right now I take 5mcg and if my next bone scan shows more bone loss I am going off it all together. I am 40 and am terrified of another fracture.

  • desertpup
    desertpup Member Posts: 18
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    I quit in September of last year. I was beyond miserable and just felt in my gut that the therapy was wrong for me. My oncologist said fine for a bit and we did a few more tests to really see what was realistic. Happily just today I received good numbers on my BCI test. 1.3% chance of recurrence over the next 10 years. So I'm out. Not doing it.