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Has anyone quit or reduced dosage of the hormonal therapy?

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  • littlebee72
    littlebee72 Member Posts: 19
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    Hi ladies....just reading all of your posts here. I am in a similar situation. On Tamoxifen for 3 years, then suddenly developed blood clots in my leg. They took me off Tamoxifen and started me on Arimidex with the Goserelin injection monthly. I was told that the Goserelin injection would stop my periods, but I have been having a constant period that is on and off heavy/light and it has been 4 months since my first Goserelin injection. I am having horrific back pain, especially on the days my bleeding is heavy. My joints are stiff all the time and I can barely walk after sitting down for any length of time. I am having a hysterectomy with bilateral salpingo oophorectomy on Tuesday. I am seriously terrified.....not so much about the surgery, but about everything after.....hot flashes, mood swings, loss of libido...….I am about ready to just stop taking all of this medication as I just never feel "good" anymore. My cancer was ER+/PR+ so HRT is not an option. Anyone else with this issue???

  • salamandra
    salamandra Member Posts: 736
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    Hey Margun,

    Tamoxifen didn't agree with me and I asked my doc to let me try toremifene (brand name Fareston) instead. It's in the same class as tamoxifen (SERM) so it's appropriate for premenopausal women. It's commonly used for late stage cancer in the USA and that's what it's FDA approved for. But there's a good amount of research (I thought, and my doctor ended up agreeing with me) that it's not inferior to tamoxifen for preventing recurrence for premenopausal women (although overall still a lot less research than for tamoxifen). The genetic variation that interferes with tamoxifen uptake is more common among Asian women so a lot of the studies are from China and Asia. My doc wasn't sure if my insurance would cover it - since it would be for an off label use and it's a lot more expensive than tamoxifen - but she was willing to prescribe it. It worked out much better for me than tamoxifen did.

  • margun
    margun Member Posts: 385
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    thanks Salamandra

  • jrnj
    jrnj Member Posts: 407
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    Hi all, I've been on Lupron since end of May, was on Aromasin for 6 weeks and now Arimidex for about 3 weeks. The side effects are unbearable, pain from head to toe, headaches, insomnia and fatigue. I was taking Allegra for a while, it felt like it helped, but it has it's own side effects I can't handle, mainly even worse insomnia. I think the Arimidex is marginally better for me, less headaches, and every other day may be tolerable. Getting my ovaries out on Tuesday, so I want to get past that and stabilize before making any final decisions. I heard Tamoxifen might not be as effective for ILC. So what is better, every other day on Arimidex, or Tamoxifen? I've read through this entire post and it seems every other day may be OK for some people based on the half life, and every day may be too strong for some people, especially smaller people.


  • BlueGirlRedState
    BlueGirlRedState Member Posts: 900
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    JRNJ - Arimidex or Tamoxifen. I do not know what is better. With the 3rd BC, my oncologist switched me from Tamoxifen to Arimidex plus Ibrance. I think I had fewer SEs with Tamoxifen. Tamoxifen blocks receptor sites and Arimidex stops the production or Estrogen. Itis really frustrating that there do not seem to be any metrics to evaluate the effectiveness of either, except statistics. And as Mark Twain so famously said " There are lies, damned lies, and statistics". Hope your surgery goes well.

  • jrnj
    jrnj Member Posts: 407
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    Blue girl, lol that was funny 😆. I’m skeptical of all the statistics, but it’s all we got. What state are you in? Signed bluegirlbluestateredcountyredtownship

  • margun
    margun Member Posts: 385
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    Yes, it is unsettling that there are no metrics to mesure efficiency of these pills. A friend of mine with early stage er and or positive Bur her2- cancer decided do not take them because her doc said that they will give 2 percent survival improvement . I do not know how it was estimated but she is not taking it and not because of potential Se but also she does not know if they can cause harm or create hormon negative cancer. I am taking letrozole. I have triple positive cancer I do not want to take unnecessary risk

    I am wondering what determines how long one will take antihormonals. You took for just 5 years some others 10. Do you know why?

  • peregrinelady
    peregrinelady Member Posts: 416
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    Margun, I had a test called the BCI (breast cancer index) that came back with high risk of late recurrence. That is why I am staying on for 10 years, if possible. I believe that anyone with positive nodes is considered high risk and recommended for 10 years, as well. It is a decision made between you and your doctor. Most node negative women are low risk for late recurrence according to the BCI, but I had micromets and a larger tumor, so I think that affected my score.
  • lillyishere
    lillyishere Member Posts: 773
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    I was told from my MO to use Letrozole for 7 years since I have ILC and recurrence happens latter than IDC. However, he said when 7yr comes, we'll discuss how much longer or not should I stay. I hope he means new research can test through blood if any cancer is present or not. I hope he didn't mean if I can make it 7 yr from now :)

  • dtad
    dtad Member Posts: 771
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    Lilly...there is no blood test that shows f you have cancer. There are markers but most docs believe they are not valid and there for do not use them. It would be great if they did have one in the future. Good luck to all

  • lillyishere
    lillyishere Member Posts: 773
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    Dtad, yes, unfortunately there is no blood test to check if a person has cancer and I hope in those billions of dollars that go for cancer research every year, a scientist may come up with a solution. Who knows! :)

  • margun
    margun Member Posts: 385
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    lily- it is funny to read your post on 7 years assessment. I have Ben told taking letrozole for five years and then maybe I will go for 10 years. I do not know as you said, it s anslysing somehow if I am still high risk of recurrence or if simply I will make 5 years in first place. I am triple positive so the risk of recurrence is high. But I am curious reading that triple positive if récure it will be earlier that others. I do not know how much data is there behind this.

  • margun
    margun Member Posts: 385
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    anyone experienced hair loss with letrozole. After chemo my hair grew back but very thin on the top. Recent’ I noticed important hair loss and it is obviously due to letrozole. Any advice how minimize this?

  • april8
    april8 Member Posts: 29
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    Hello-I was diagnosed with ER+ PR+ breast cancer as well as HER2+ breast cancer in 7/2014. Had lumpectomies and breast reconstruction, Taxol, Herceptin and radiation. Started on Arimidex in April 2015. Stopped in 9/2018 due to very bad joint problems. Took Tamoxifen until June 2020. Stopped because I had my tumor analyzed (do not know the name of the test), and the result was that Tamoxifen would offer no benefit to me. One month after stopping, my hair went from very dry to oily and I did feel better. My other doctors wanted me off Tamoxifen because it can cause strokes and cataracts but wanted to be sure that I was doing the right thing

  • jrnj
    jrnj Member Posts: 407
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    I didn't think I would be able to take AIs, I was completely nonfunctional, but starting to see a light at the end of the tunnel. I'm on Arimidex, no more Lupron. I feel much better from the neck up. No more headaches, minor agitation. Still some insomnia, but sleeping much better (with Lunesta). I was going to take it every other day, but now I think I actually feel better taking it every day, because as it wears off I get agitated and unfocused. Main issue now is pain throughout my body, especially hands, arms and feet. I'm trying celebrex and a bunch of supplements, but not working much. At least I can make dinner for my family now, but I am still in a lot of pain.



  • foxbriar
    foxbriar Member Posts: 2
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    I am glad to be reading tis post. I have been "TRYING " to take Letrozole since the end of June.Right away I started have SE Severe joint /muscle/stomach pains.Headache,nausea,dizzy,extreme fatige ( sleeping 12-14 hrs a day ) couldn't concentrate.Followed by Migranes,then Vettigo.Also my toes were numb all the time.Hot Flashes.the fatigue was so overwhelming if I didn't lay down I would fall down;knocked me out & aftrewards felt like a zombie & no energy.The Dr. said do every other day.That helped a little but as soon as I went back to every day same SE.I am very sensitive to meds & can't even tale a Tylenol without it knocking me out.I felt the dose was too strong for me but no one would listen.The Cancer Nurse said none of what I was say were SE of Cancer or the meds !! Really !! It says so right on the info sheet from the pharmacy !!Same thing happened with radiation & I ended up very sick,first with a breast inflammation & then a Breast infection.I went back to every other day for a few days.On my own I asked pharamcy for a different brand. I did not take anything for 3 days ( felt much better ) then day 4 started new brand.Much better but still awful pain in joints & muscles..Can barely get out of bed ( pain & weakness ).I have done the research & did scores.It didn't look like there was much benefit for me but the tools don't take into account HER2 +,which I am. Stage 1A tumor .6 mm no lymph node involvement & age 73.I went to the eye Dr.this week & he said the letrozole was giving me the headaches/migarnes/vertigo. I really don't want to take this at all but the Dr. says,"you no take it,you die.Take it * you l live to 105 ". That doesn't seem to coincide with all the research i have read.I am taking the new brand every other day & see how I feel.I can not live with all these SE for another 20 years !! I have been having no quality of life since I started all these Cancer treatments for a tumor the size of a pencil point !!! Comments/Support please !!

  • foxbriar
    foxbriar Member Posts: 2
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    Three Tree...I had the same question myself ! I went through menopause in my early 50s & was not diagnosed with Caner until age 73.Twenty years of no natural hormones...how could I have any left ?? I did read that our bodies will make "some " off of our fat as we get older.But no one has tested my levels before or after therapy & no one is interested in exploring my question OR giving me an answer.They just say "take the pill " They don't want you looking up stuff or asking questions.They just say "it's Standard of Care " !! I feel I am an individual & am supposed to be having my treatment plan made just for me ...but it SURE doesn't look that way to me !!

  • moderators
    moderators Posts: 8,085
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    foxbriar, we are so sorry you are experiencing these difficulties. It's not unusual. So glad you found this group. Medicating

  • BlueGirlRedState
    BlueGirlRedState Member Posts: 900
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    JRNJ and FOXBriar - I hope things start going better for you with the AIs. I think the brand name Arimidex has fewer SEs than the generic, but I am starting to feel them, stiffness in hands and locking finger on the left. The rest of the body seems ok. Ibrance switched from capsule to tablet, and I think the tablet is a little dehydrating. After the switch I experienced very mild almost not there headaches that felt like dehydration, so I do make an effort to drink more water than I was. I tried comfrey which one person recommended, but I think that was making things worse. I think accupuncture helps. I was trying electrostim with it, but not sure if that helps or not. Hair thinning and drying out. Staying active helps. Walk/hike daily, usually stretch, trying to get back into the Strive circuit weights at the Y. I use turmeric in diet as well as supplements, also glucosamine/chondroitin. I notice absence of turmeric rather than presence. Jury out on the glucosamine/chondroitin. Read that melatonin has an anti-estrogenic effect, but the study reviewed a bunch of other studies, rather than being its own study, concluding it needed to be researched more https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6017232/

  • xsuzx
    xsuzx Member Posts: 2
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    I have been on Arimidex for 2 years, and have gained weight, have thin hair, and my joints really hurt more than before. I know those are all side effects, and I am grateful for a clear memo this month. But Is there any pain medication you guys are taking? I have been taking 800 MG of Ibuprofen twice a day for the pain in my joints, and I know that can't be good for you. Is there another choice? Thanks in advance. ❤️


  • jrnj
    jrnj Member Posts: 407
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    Suzanne89, I'm taking a lot of ibuprofen also, and am worried about it. But not that much. Trying to stick to 600 mg per day. I asked the Dr. for celebrex, because it is cox 2 only and supposed to be easier on organs than ibuprophen. But not sure if it is working. I took my Arimidex for 7 days straight, did ok, than yesterday my body melted down, I don't know if it was all the work I was doing or the glass of wine or both. I skipped today. I've decided to take it for as long as I can tolerate, than take a break if I need it. Dr. told me to take it every 3 days, but I'm doing better than that. I think the Tumeric does help a little.

    BlueGirlRedState, My hair is growing back really thick and curly after chemo. It has always been thick, except the last few years i think the cancer affected it. Now i"m worried with the ovaries out and the Arimidex it will start falling out again. I can already tell the growth has slowed since my surgery. I can tell by the grey line.

  • KCKCKT5
    KCKCKT5 Member Posts: 6
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    Wanted to see if anyone had the numbers for how long you stay on the blocker.

    So the benefit by year taken?


    Thanks~

  • summerangel
    summerangel Member Posts: 182
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    Just adding my experience to this thread. I took Tamoxifen for about 4 months after my diagnosis with terrible side effects, even after cutting the dose in half. My risk of distant recurrence without it was about 10% so my oncologist gave his blessing for me to stop. It's now been 5 years, no recurrence. With such a low risk it was worth it to me to quit.

  • flashlight
    flashlight Member Posts: 311
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    Suzanne89, In another post I read where a dose of claritin every day helped with bone pain. 800mg of ibuprofen twice a day is hard on your kidney/liver function. Usually if you are taking a large dose routinely it is monitored by your primary by having routine labs. I was given that for 2-weeks after surgery. Try taking half that with an extra strength tylenol. I was checking out CBD/THC post for pain.

  • margun
    margun Member Posts: 385
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    thé Tumeri helps with pain or inhibiting hormones?

  • laughinggull
    laughinggull Member Posts: 512
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    In my experience (taking a daily Turmeric supplement dutifully for a couple of months), Turmeric doesn't help at all with bone pain. Swimming does help me with bone pain, though. I am on Anastrozole (Arimidex), on top of oophorectomy, so my estrogen levels must be close to zero. Based on the available evidence, I would not quit, but my side effects are annoying and not incapacitating.

    To the poster who said nobody is checking her hormone levels...my understanding is that there is no good test, and what can be tested/measured is not a reliable indicator of whether or not the treatment is working, or that it would be reasonable to reduce dosage. So they wouldn't be able to tell you anything, or make any decisions for you, based on measuring your estrogen levels, that's why they don't do it. But the MO should be able to explain this to you.

  • BlueGirlRedState
    BlueGirlRedState Member Posts: 900
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    Painkillers and Ibupropen. Some of you mentioned taking what souds like a lot of Ibupropen daily. Please talk to your oncologist/primary about this, ND if you see one. On the long term, this much ibupropen could cause other problems. Pain is very individual, and what each person experiences / can tolerate will really vary. I think turmeric (both in diet with black pepper) and as a supplement helps, but I tend to notice its absence rather than presence.. I also take glucosamine/chondroitin, jury is still out and whether it helps. I find acupuncture helpful as well as staying hydrated and active. Several have posted on various forums that marijuana/CBD/CBD with THC helps - oral and or as balm/lotion. I did not find relief or sleep with CBD with/without THC, incuding one brand recommended by a friend. Some post on various treatment forums, there are also forums dedicated to CBD/THC. I also tried Comfrey which person posted about. It seem to make the pain worse for me, so I stopped. It might have been other activities, or the continued use of Arimidex and Ibrance or even dietary that I just have not recognized. I will give it another chance in a few weeks.

  • sumomo
    sumomo Member Posts: 23
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    I couldn't bear the side effects of any of aromatase inhibitors so I got back to Tamoxifen, which I tolerate better. But, I'm wondering if having less SE of Tamoxifen means I don't have enough CYP2D6. Has anyone taken a CYP2D6 test to see how Tamoxifen works for you?

  • rah2464
    rah2464 Member Posts: 1,192
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    Sumomo I did take the test and I am an intermediate metabolizer. Who knows what that truly means, other than my MO really doesn't want to play with reducing dosages. The best I can do right now is to take 10 mg twice a day, the theory being my peak concentration during a 24 hour period will be less (should hopefully lessen some side effects), but my clinical dosing level should be high enough to be effective. Since there is no test established to determine efficacy by blood levels we have to guess.

  • whatjusthappened
    whatjusthappened Member Posts: 178
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    Just to add my experience here. I have been taking my arimidex every other day because I noticed the side effects were a little more bearable that way and I figured it was better than nothing. Now I'm thinking of stopping altogether. I have other conditions that are really aggravated by the arimidex and I'm starting to think the cons of taking it are outweighing the pros. Had a long discussion on another thread when I first started taking it about how much risk reduction it would actually give me, and we came up with about a 6% reduction of risk, or 13% without it. I figure that the lack of sleep, weight gain (and subsequent rise in blood sugar) and rise in blood pressure might just negate that 6% reduction anyway. Add in the reduced quality of life (especially the joint pain), and the scales really start to tip in the direction of not taking it. As the Garth Brooks song says, "I'm much to young to feel this damn old!"