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"Roll Call" for those who've stopped Hormonal Therapy early - short post to share status?

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245

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  • gigil
    gigil Member Posts: 913
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    Gailmary your story is very interesting. You are absolutely right. The side effects were a lot like the things one goes through in menopause. They are definitely no fun, but they aremore tolerable than the pain bone mets cause. Oncologists are so good about looking out for us - even helping to alleviate side effects and anxiety. I am so glad to hear about your stable situation. There are fast developments coming down the pike in regard to breast cancer. Here’s hoping we all find answers very soon.

  • DanielleJS
    DanielleJS Member Posts: 1
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    Hi, I think this could help many women make a better decision about endocrine therapy. I personally could not do it. I was diagnosed at 49 with invasive mixed mammary IDC/ILC one multifocal tumor 1 cm with DCIS and LCIS plus 1 micromet 1.3 mm, grade 2 with Ki67 12%, oncotype 9 so I did not need chemo or radiation. I elected to have a double mastectomy and my ovaries removed because I am both 99% estrogen and progesterone receptor positive. I was on tamoxifen for 4 months until they removed my ovaries and fallopian tubes. Tamoxifen made me borderline suicidal with hot flashes, bone pain and weight gain. I have never been depressed nor a weepy kind of girl so I was happy to switch to arimidex. The first few months weren't bad. My hair started falling out, I had some bone pain, insomnia, blurry vision and of course hot flashes. I thought I could deal with it. Then, the bone pain became so bad to the point when I got up to pee at night I felt like someone broke my legs. The pain was insane, but my personality was also changing. One minute I was super short and impatient the next crying over trivial things. My blood pressure increased, I was constantly tired, but with severe insomnia. I've been a nurse for over 24 years so when they try to tell me it's not the medication I call BS. We're not stupid, we know our own bodies and we know these are side effects. I also do not want to take medications for the side effects which come with their own side effects. Ironically when I stopped taking it I felt like me again so it's not just the lack of estrogen (I don't have ovaries anymore) It's definitely the medication. That being said, I think if you're prescribed it you should at least try it because a lot of women do not have side effects from these drugs. I am just not one of them. It was officially one year 1/11/2023 NED. I have been off arimidex for a few weeks, I am already back at the gym which I had to give up because of the bone pain and I am back to my normal happy go lucky self. My blood pressure is even back to normal. I refuse to give up all the things I love for a drug that may or may not prevent it from coming back.

  • [Deleted User]
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    daniellejs, thank u for your post. I know this topic is supposed to be for people that have stopped taking AI's for over a time period and what their experience has been. I am almost 20 years older than you. What struck me is your advice to at least try the meds. Everyone should at least try. I think many of the SE are dose related and that there has not been enough research into titrating it to individuals. This is only my opinion. Drug companies are not your friend, they are like any corporation, they are in it for the $. Yes, I understand it costs money for research etc. That said it's a hard decision that never feels comfortable.

  • jonesd01
    jonesd01 Member Posts: 13
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    I would love to hear about your ND oncologist - have been looking for one. Thanks!

  • BCat40
    BCat40 Member Posts: 121
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    Dx at 40 in Jan 2020, 8mm ILC, no nodes, Oncotype 20, tried Toremifene (sister to Tamoxifen) for 4 days and was horrendous with multiple systemic SEs. Tried raloxifene for one month and discontinued due to musculoskeletal pain. Refused ovarian suppression from the beginning, was not interested in menopause 10 yrs early. 3 years out now NED. We shall see. Multiple oncs tried to bully me into the meds. I see it as the cancer is not coming back until it does, and I will live whatever years I have outside of the cancer-related bubble (i.e. 5-10 yrs hormone deprivation), thank you very much.

  • beginagain22
    beginagain22 Member Posts: 100
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    Dx at 48 ER/PR + HER2 -. I did 4 months of Anastrozole and it was awful. Joint pain, hot flashes, insomnia, but the fatigue was the worst . I switched to Letrozole and the fatigue was better but the joint pain was terrible. I tried moving more but it made it worse instead of better. Insomnia was still there. I have thrown in the towel. I quit taking them a week ago. I see my MO again in April and I am sure she will flip, but I just need to be able to function. I need to be able to go to the gym. What is the point of getting through BC if I end up with a heart attack from sitting around because it hurts to do more. I lasted 6 months on Letrozole. I bow down to you who have years in on these drugs

  • kbegum
    kbegum Member Posts: 4
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    thanks for sharing your experience with breast cancer hormone therapy. My mother just got diagnosed with stage 1 breast ca and had lumpectomy. The doctors are considering tamoxifen or arimidex. But reading the side effects can make life horrible. She is 84 and has osteoporosis otherwise pretty good health. We are considering skipping hormone rx.

  • kbegum
    kbegum Member Posts: 4
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    hi did you have baseline osteoporosis before starting AI?

  • racheldog
    racheldog Member Posts: 209
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    I am glad this thread was started. Last night I felt very bad for another lovely lady on this site who just went to Stage !V mets after struggling for 3 years on Letrozole. I am also in a breast cancer Zoom group which is becoming depressing (I may quit) as I hear that many of those women also had met recurrences even after taking AI drugs.

    Violetkali I have followed your posts and I am also Her2+ (your original profile said Her2-?) and our path reports are similar. I was an advanced practice RN and have seen much in patient care over a lot of years. I tried the AI drug Letrozole which was awful. I have to be able to function, am single, manage a house with animals, etc. I have always believed these drugs have such a horrible toxic profile. (not just pain but cardiovascular, retinal, uterine, etc. ) What is the point of feeling awful on them for years and still get a recurrence? Or another health issue from them? A crapshoot IMO if that will happen.

    My MO is kind and listens but they have to stick to protocols. They cannot counsel you to not take them. After reading about the other lady I was following on another thread I feel compelled to try Aromasin to see how that will be tolerated. Very scary. But meds and I generally do not get along and my entire life I have not taken meds or even OTC drugs unless absolutely necessary. I will try once more on Aromasin and if that is a failure I need to find a way to put endocrine therapy to rest. I wish I could find a good ND as well. I have purchased a host of supplements for BC prevention (hopefully) but as usual.....no data on these.

  • luvdbyhim
    luvdbyhim Member Posts: 187
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    I had been on Anastrozole for 9 years. First few weeks joint pain. I did notice over the years if I had too much sugar in my diet my hands would ache. So I went on a no sugar diet for 9 months (seriously no sugar, stevia, honey - nada) the joint pain in my hands subsided. Then in Oct I was in a car accident and when they did a scan at the ER guess what they found? I am now Stage 4. I am not even sure the Anastrozole worked or for how long since MO never took scans after my 2013 completed treatment for recurrence.

  • racheldog
    racheldog Member Posts: 209
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    OMG. Luvdbyhim----yours is the kind of story that makes one really wonder if putting oneself without any estrogen and the true toxicities of these AI drugs is even worth it. I don't see your original diagnoses or path loaded into the computer. But you had nine years never knowing anything. Where did the scan find mets?

  • paknc
    paknc Member Posts: 48
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    Posting an update, NED. Did Tamoxifen for 6 months, Jul - Dec 2020. Stopped per provider's OK because HbA1C went from 5.0 to 5.7 (turned prediabetic despite being fit, thin, etc.), and blood pressure went up. Meanwhile, mammo and ultrasound indicated DCIS had progressed despite being on Tamoxifen (I was in a clinical trial and randomized to active surveillance). I did cryoablation (off protocol) in Feb 2021, a PreludeDx pathology tissue test indicated that I wouldn't benefit much from radiation so I stopped there with treatment.

    I have the benefit of being older and having witnessed the quality of life declines that women deal with as they age in my family tree - through my Mother and others. I have a high risk of osteoporosis and there is dementia in the family. Therefore, I made my "deal with the devil" and in my case, decided that quality of life was more important to me than years of life. I don't want diabetes and all of the complications that come along with it from taking a medication that may or may not help me ward off cancer. I want to prevent osteoporosis for as long as I can. If I get a cancer recurrence or metastasis sooner than later, I'll be disappointed but accept it.

  • kbegum
    kbegum Member Posts: 4
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    has any one made decision regarding hormonal therapy based on mammaprint 70 gene study ?

  • susyque8
    susyque8 Member Posts: 4
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    My original diagnosis was in Feb 2017 at age 57. Right IDC 1A. Lumpectomy and re-excision to obtain clean margins. No chemo. Whole breast radiation for 16 fractions. Onco score of 16. I stopped AIs (two different ones) after 9 months. Foot pain made walking difficult. Could not open a bottle of water and developed trigger finger in both hands. MO agreed. Six month mammograms and ultrasounds plus blood labs checking tumor markers every 4 months.

    Fast forward to Dec 2022: New 2nd IDC dx in left breast discovered on 3D mammo confirmed with biopsy. MRI has identified 2 additional areas. One in a different quadrant so a 2nd biopsy is needed to determine if lumpectomy is still viable. I do not regret my decision to stop taking AIs and do not intend to try again. I just don’t want to have to fight that battle with every doctor in the process trying to guilt me into resuming the drugs

  • maggie15
    maggie15 Member Posts: 955
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    susyque8, I found a way to cut short the hormone therapy battle at every doctor's appointment. I made a pro/con list and bring it with me. The one pro is "Statistically may prevent recurrence, but who knows what will happen in my case?" My con list currently has 13 reasons on it and has grown a bit since I initially wrote it due to new medical problems. My MO burst out laughing and while he again recommended 10 years of AIs he also remarked that I was making a well informed decision. The other medical professionals generally react with silence but don't try to change my mind. It makes appointments much more pleasant because it bypasses the arguments since none of them would choose all the bad stuff on my con list. I'll take AIs if I happen to become metastatic but since they are my only treatment option due to pulmonary complications one of my cons is that I won't be endocrine resistant if and when I really need them.

    I hope you can have the surgery you would like to and everything stays local. All the best!

  • bren2007
    bren2007 Member Posts: 1
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    My first breast cancer was in 2007 and was ER+,PR+, HER2-. It was a moderate grade and about 1 cm in size. I was Stage I. After a lumpectomy and radiation on the left side, I started on Arimidex. (I was 51 at the time and on hormone replacement therapy prior to my diagnosis.) I took the medication for 6 days. It made me very very sick - nausea, vomiting, and fatigue and migraine, as well as lightheadedness and dizzy spells. I couldn't drive - it was that bad. I was reluctant to try another aromatase inhibitor ... so I was started on Tamoxifen. I lasted six weeks on this one - same bad symptoms - until I quit taking it too. It's a very difficult decision to make - the medical profession and cancer community pounds it into your head that you have to take these medications or your cancer will come back. I don't regret stopping the medications. I have been cancer-free for 16 years. However, I was just diagnosed with a new primary on the other side. I don't know the receptor status yet and I meet with the breast surgeon next week. Assuming the tumor is ER+, I will most likely not take hormone therapy. I'm also thinking hard about skipping radiation this time. It was a really bad experience for me. If I can have another 16 years NED without the meds, I'll take it. Bren2007

  • inthesage2
    inthesage2 Member Posts: 17
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    Paknc How did the cryoablation go?

    I'm almost 1 year out from chemo and have my 6 month breast MRI next week. It took me a long time to just get over the side effects of chemo after radiation. I absolutely refuse to even try AIs. I have a high dexa score and an auto-immune disease so extra joint pain and possible fractures (as I am very active hiker) are risks I do not want. I tried tamoxifen and within one week I had pelvic pain. I saw a naturopathic oncologist in Phoenix in December. She did a hormone test to see my estrogen levels as I was 100% estrogen positive cancer. My levels for the bad estrogens were very low and she felt I did not need any hormone treatment even with a 33 oncotype. She gave me a bunch of different supplements instead. I see my doctor next month after the MRI. I know he wants to discuss hormone treatment. The only drug I might try at this point is Evista. Anyone have experience with taking naturopathic supplements. One called breast defend with mushrooms and quercitin. And more Quercitin supplements. My doc says quercitin protects breast pathways.

  • minker
    minker Member Posts: 1
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    Hi, I just joined but I’m happy to have found this group. I stopped getting faslodex injections about 4 months ago. I had started them in march of 2018. I have lived with terrible side effects that made me decide to take the risk, opting for quality of life instead. My side effects were fatigue, depression, increased seizures because I have epilepsy and the killer has been constant severe joint and muscle pain I have had brief periods where it didn’t hurt but they don’t last. I’ve read it takes 6 months to get it completely out of your system. So far my energy has come back, my depression is gone and I was able to lower the amount of seizure meds I need. I am still waiting for my leg and bone pain to stop. I am wondering if anyone else has been living with chronic leg pain? I had been unable to use tamoxifen because of bone pain.

  • trilogy
    trilogy Member Posts: 9
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    I just stopped Tamoxifen after only 4 months. Side effects: Crushing fatigue, Brain fog, dizziness, urinating ALL the time, incontinence, weight gain, some joint pain but not too bad. I have RA and take monthly injections.

    My BC started out as DCIS Stage 0 and after Lumpectomy found another small bit - another Lumpectomy but now Stage 1. Told it was not aggressive. I am 73 years old and to feel like I have for the past 4 months until I am 78....just doesn't make sense. Of course, if it comes back, I will certainly do something more aggressive. I have a trip to Scotland coming up in May and just hope I have enough energy to get through. Hopiing it doesn't take me 6 months to get over the side effects of the last 4.

  • princessbuttercup
    princessbuttercup Member Posts: 159
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    Thank you for this thread. I just decided to stop hormone therapy in November. I did Tamoxifen, then Letrozole, and finally Exemestane for a total of 4.5 years. Each one of these drugs had debilitating side effects.

    My first oncologist moved to another state just after Covid started and between my Tamoxifen (then complete hysterectomy) and Letrozole treatments. My new oncologist (replacement for first one) has been completely unsympathetic, and has downplayed my symptoms (calling them "complaints" at one point). She said there is basically nothing else that she can do for me now except for regular checkups, and that any other care is based on symptoms as they occur. My primary care doctor told me to stop doing self-exams because of my lumpy breasts. I'm trying to change MO's but am unsure if this cancer center will allow me to do so.None of this is acceptable to me.

    Side effects from AI's have been debilitating fatigue, urinary incontinence, painful joints, inability to exercise due to pain, increased A1C, GERD, and a hiatal hernia. If it was a little bit of fatigue and pain I could manage it and get to 5 years. But this is not just a little fatigue or pain. After stopping exemestane I feel like I have my life back and I am myself again. I've also lost 9 pounds.

    My onco score was 26. Stage 1, no lymph nodes involved, but grade 3. I did have radiation followed by four weeks of chemotherapy. I guess time will tell, and I will search for a more supportive oncologist and primary care doc.

  • trippositive
    trippositive Member Posts: 21
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    Hi, I was diagnosed in May of 2020. I struggled with the Aromatase Inhibitors for a long time. I came across a clinical trial that tested the efficacy of Letrozole if only taken every other day, half the dose daily and the full dose. It showed that taking Letrozole at half the dose or 3 days a week was just as effective. I tried that for about 6 months and I was able to tolerate it well. You can google Letrozole dosage clinical trial and it should come up. I have had some setbacks with my health so I stopped taking it, but I do think I will go back to half dose once I am feeling better.

    I call this the poison pill, it’s just awful and I definitely think it’s a personal decision.

    Best of Luck!

  • princessbuttercup
    princessbuttercup Member Posts: 159
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    Wow, thank you, trippositive! This info will be very helpful to everyone who's struggling, I'm sure. I'm going to a new oncologist in Sept so will definitely bring this up then. My now-former MO told me that it's not possible to take long breaks and have it still be effective, but I found a study about Letrozole which said that breaks are helpful to keep patients taking the meds and not detrimental in the long run. Letrozole was definitely a poison pill for me, too. I hope that you're feeling better soon.

  • pokemom1959
    pokemom1959 Member Posts: 67
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    After my first diagnosis, lumpectomy and intraoperative radiation, I was still pre-menopausal so I was put on Tamoxifen. I tolerated it well for about 2 years but then started having extreme fatigue and joint pain. I talked to my oncologist and she said she was not too concerned about me stopping Tamoxifen because my change of recurrance was so low. Based on her opinion as well as the debilitating side effects, I decided to stop.

    8 years after my initial diagnosis and about 6 years after stopping Tamoxifen, I was diagnosed again, same breast and in the same general area. Was it because the intraoperative radiation? Or because I stopped the AI early? Who knows. I do know that this time I hit it with everything available including another lumpectomy, chemo and full breast rads. Since I am now post-menopausal, my oncologist put me on Letrozole. So far so good. I've been on it for almost a year and am having no side effects so I plan to hang in there.

  • lef
    lef Member Posts: 32
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    Pokemom -- I'm so glad to hear that you're doing well on letrozole. I just started taking it and it seems like so many people have had unpleasant SEs. Thanks for sharing.

  • Tinkthetonk
    Tinkthetonk Member Posts: 6
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    I am so thankful that I saw this thread today. I have been using Tamoxifen for almost 3-1/2 months and I feel like I've turned into a hypochondriac who feels like I'm always getting UTIs or Yeast Infections - when I go in to be tested, I don't have anything wrong. I've got abdominal pain that starts at about noon every day and keeps me from enjoying my daily life.

    Prior to Tamoxifen I took Aromasin for years but the brain fog and high blood pressure finally drove me off it. Anastrozale and Letrozale didn't work.

    I was diagnosed with ILC in 2018. I was triple positive. I did chemotherapy, bilateral mastectomy and rads. I've done almost five years of hormone therapy on top of perjeta, herceptin and kadcyla. I think it is time to be done with it all.







  • threetree
    threetree Member Posts: 1,386
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    TinktheTonk - I have felt that way on Letrozole, i.e. like I have turned into a whiny hypochondriac. It seems like something was always wrong and yet whenever I went in to get things checked out, I was always fine. I hate it. I've taken Letrozole for over3 years now, and it didn't work very well, as I have moved on to stage 4 now. In the near future I think the dr will stop the Letrozole and trade it for some other anti-estrogen drug, but I don't have high hopes that it will make me feel any better than Letrozole.

    From all you've been through, I totally agree that it is time all this should stop for you! People can only take so much.

  • Tinkthetonk
    Tinkthetonk Member Posts: 6
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    Thanks threetree! I feel good about my decision.

  • MelissaLynn
    MelissaLynn Member Posts: 1
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    My first post since diagnosis in October 2016. Hormone therapy sucks, but so does cancer. I thought it was just me having issues with standard of care. The worst part of my cancer journey has been the doctors, specifically med oncs. I'm not stupid, none of us are, we just trust doctors because they are doctors. I've been prescribed the wrong meds for my situation, overdosed on meds that are right for my situation, and here I am today considering stopping treatment because I don't trust my current med onc's clinical abilities. I've had five years of endocrine therapy. My BCI came back at 8.3% chance of recurrence without another five years of treatment. I can get that down to 5% with another five years.

    Currently I have osteopenia, a B12 deficiency, a D3 insufficiency, and that's just what I've figured out so far with the help of google and begging for orders for blood work. I can't stay awake, everything hurts all the time, but the worst for me has been what it's done to my focus, cognition and memory. I can't function. And she wants me to continue for another 5 years to reduce my risk by 3.3%.

    Princess Buttercup, if you haven't already ask your med onc to order the Breast Cancer Index (BCI) test. It's almost standard for people on endocrine therapy and it might provide solid answers. I'm also getting a second opinion (in a different metropolitan area than I'm in) on my entire course of treatment and what I should do next. I didn't even start hormone therapy until almost a year after my lumpectomy so it might not even matter what I do.

    Hang in there everyone! God's got this!

  • AKJ
    AKJ Member Posts: 115
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    I stuck it out with anastrazole for 7 years. My oncologist said that 7 years instead of 10 was good enough. I tolerated it ok but wanted to put cancer behind me. 2 years after going off of it I was diagnosed stage 4 with mets to lungs liver and brain. I sometimes wonder if I should have gone the extra 3 years. No way to know

  • threetree
    threetree Member Posts: 1,386
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    akj - I've done 3 years with Letrozole, and granted I only took it every other day, contrary to the prescribed every day, and now I am stage 4 with mets to spine, sternum, and ribs. As you said, we will never know. (I had read a few studies that said every other day provided very similar coverage as the every day dose, so I took the risk and went with that, because I could not tolerate the side effects otherwise. Thought something was better than nothing.) There are those who also faithfully take the fully prescribed every day dose, and they don't even make the standard 5 years either, so again, there is no way that any of us can know whether our cancer would have spread with or without these "endocrine therapy" drugs, no matter what dose or how many years we take them. It makes the decision to take them or not take them all that much harder.