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

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Comments

  • AKJ
    AKJ Member Posts: 115
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    threetree, I agree. The doctors at my clinic have repeatedly assured me that I did everything I was supposed to.

  • happyhiker1
    happyhiker1 Member Posts: 26
    edited March 2023
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    threetree Like you i am opting for every other dsy of my AI (arimidex), at least sofar (4 mos) and so far no noticeable side effects

    I am concerned to hear yr cancer returned despite the AI …was there anything in yr original diagnosis that might have predisposed this? Sending warm thoughts yr way!

  • threetree
    threetree Member Posts: 1,426
    edited March 2023
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    HappyHiker - I did have quite a large tumor (5.5 cm, ER/PR+, HER-, no nodes, no visible spread at diagnosis). There was a very small spot they could not get, so I didn't get clean margins. It was small and they were all sure that the radiation would take care of that, so there's another, "I'll never know" thing.

    My understanding is that it is not all that uncommon for someone who takes their AI very faithfully and according to prescribed procedures, to have it return, so they are far from foolproof. I guess that where they see the positive is in the overall collective statistical survival rates. Taking an AI doesn't mean that a given individual will benefit, but the collective statistics show overall benefit to the large statistical group.

    I'm seeing the same thing now as I anticipate starting the stage 4 drugs. They seem to generally give 2 drug combinations with one of them being an anti-estrogen drug of some kind. Obviously they don't work either because most of the stage 4 people take one of these combinations for a period of time, then they see progression, and then switch to a new combination (including a new and different anti-estrogen drug), and so on and so on until there are no more drugs to try. So I think that overall these drugs are way overhyped, and given the side effects, they are just not all they are made out to be.

  • salamandra
    salamandra Member Posts: 745
    edited March 2023
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    Statistically, endocrine treatment reduces recurrence risk by a third. A third is both a lot and not a lot.

    I remember reading a thread of folks with triple negative supporting each other trying to get onto a trial for a drug that might have reduce the risk of recurrence. Those folks have no medical intervention at the moment, and even the chance of a reduction was something worth fighting for for many of them.

    On the other hand, science is still learning about the hormonal treatment.There are probably many women receiving it who don't need it (because their cancer was truly and fully removed by surgery) or who won't get any benefit from at all (because their cancer is not responsive to the drugs we have), but we don't have the technology to determine those things yet. We can't be sure that any particular woman has any reduction in risk at all from them, not even 1/3.

    A person's risk/benefit calculation should be informed by the science and statistics, and by the advice of a trusted and hopefully experienced doctor, but in the end there are still so many unknowns that the final decision must take into account personal and subjective factors that a person has to decide for herself.

    In general I would advise women to give hormonal therapy a shot, since there is a decent chance that they will be able to find one that has tolerable or no side effects. But how long/hard to keep trying and when to call it quits is super personal.

    Better than doctors pressuring women or women pressuring each other is all of us supporting government funding and policy that promotes medical research that prioritizes the development of scientific knowledge rather than private corporate pharmaceutical profits.

  • threetree
    threetree Member Posts: 1,426
    edited March 2023
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    Salamandra - I couldn't agree more about how the research focus should be on finding things that work, and not just things that they can sell.

  • maggie15
    maggie15 Member Posts: 997
    edited March 2023
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    Salamandra, I agree with your sentiments. I read a paper with research at the cellular level which found that 40% of people have one of four SNPs on chromosome 14 that allow AIs to cause cartilage degeneration. When I asked my MO if a test could be developed to screen patients rather than wait to see if joint pain appeared he told me that there would be no money in that for the drug companies.

  • happyhiker1
    happyhiker1 Member Posts: 26
    edited March 2023
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    pokemom1959 When mine returned in same breast 2.5 yrs later i wasnt given a choice to escape a mastectomy, In yr case your dr didn ‘t think that was necessary? I thought that was standard practice..

  • pokemom1959
    pokemom1959 Member Posts: 67
    edited March 2023
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    Nope - my breast surgeon (who is one of the best in the area), did not recommend or even discuss a mastectomy. Her immediate plan for me was the bilateral lift and reduction. I was quite large before (DDDD cup) and the surgery brought me down to a C (they removed 2.5 pounds of breast tissue on each side), so maybe she thought that because the cancers were so small and they were taking so much tissue, that that would be sufficient. Only time will tell, but I did do chemo (even though I was on the cusp of not needing it) and the full breast radiation and I’m planning to do the full 5 years on the AIs, so I’m hitting it with all I can at this point. Fingers crossed

  • BCat40
    BCat40 Member Posts: 121
    edited March 2023
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    Melissalynn, that is ridiculous for 3.3%. Some MOs have nothing but tunnel vision for meds with zero regard for QOL.

  • racheldog
    racheldog Member Posts: 209
    edited April 2023
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    I am sitting looking at a script for Aromasin which I planned to start today. Letrozole was awful. I have been posponing going on any of these AI drugs. I am older and had a good life and health before early stage breast cancer. I am truly scared to start these awful drugs even though I am HER2+ and Grade 3 very small early tumor. I did chemo and radiation but have been postponing AI drugs.

    Last night I read an article by Cardiologist (2020) who are studying the effects of AI drugs on the heart. I still feel these are a crapshoot and Oncologists (who are not cardiologists) just push these on everyone because it is their specialty protocol.

    I have been so guilt ridden about not doing these. What was in this relatively new article was that there was a high *80%+ risk of heart failure on these AI drugs. I believe cardiac wise women need estrogen! This terrifies me. Take these drugs and end up with a cardiac event? I have a strong family history of cardiovascular events. Not me, so far, thank goodness and would like to keep it that way.

    Aromosin also causes trigger finger and nausea and vomiting by it's side effect profile. I think they all do. Would like to know how women have tolerated Aromasin over the other two AI drugs. Did any of you have any issues progressing to worsening cardiac symptoms and had to stop? Worsening echocardiograms? Please chime in.
  • lillyishere
    lillyishere Member Posts: 773
    edited April 2023
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    racheldo, have you asked your MO about your heart risks? Also, if I was you, I would get a second opinion considering that you had a very small cancer and did chemo and radiation. If I was you I would ask for the data on possible recurrence rate in your case. AI are powerful drugs and we don't know the fine line where benefits are higher than risks.

  • racheldog
    racheldog Member Posts: 209
    edited April 2023
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    I have asked about recurrence rates over and over and over. Never a solid answer. I don't thing MO or other providers can really give a concrete answer as so much of this is a crapshoot if it will return. I have done calculators --as many as I could find but most deal with mortality and not recurrence.

    Choices we make in our 40's and 50's are certainly and would certainly be different than when you are older. I am older and these AI drugs just sound horrific and QOL suffers for 5 years of longer.


  • oldladyblue
    oldladyblue Member Posts: 302
    edited April 2023
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    Oncologist still seeing me every 4 months. Does a manual breast exam, checks my blood tests and no longer even mentions AIs to me as she knows I won't take them. Almost a year since I stopped taking Anastrozole and all side effects seem to be gone, even the chronic thigh bone pain. Additionally, I'm following Dr. Berg's intermittent fasting/healthy keto plan. https://www.drberg.com/blog/lower-your-cancer-risk-down-to-zero I was told awhile ago by a visiting nurse who sees terminal cancer patients that getting in shape a losing excess weight cuts future breast cancer risk about 40%. So far I've lost 32 lbs, started going to the gym 3 times per week, have loads more energy, sleep better, lowered blood pressure, no longer pre-diabetic.

  • threetree
    threetree Member Posts: 1,426
    edited April 2023
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    Racheldog - I have done Letrozole for a little more than 3 years now, but only did it every other day. Just late last January I got word that my cancer spread to my ribs, spine, and sternum. Whether taking the AI at all, or taking it only every other day made any sort of difference, I'll never know, so I don't think anyone will ever know either way whether they take it and quit, take a lower dose, or don't take it at all. Like you said, it is all a crap shoot and the statistics they have are for the collective group, not any given individual. The calculators would have given me better odds than what I seem to have received in "real life". Those statistics don't seem to apply to me as an individual.

    Re the heart issues with the AI's, I did bring that up with the oncologist once and only once, because she said, "What heart issues?!" When I told her I'd read that the AI's can have serious cardiac effects and that I was concerned she said that, "Well, it's nothing that your regular PCP couldn't handle."

    This was the article I'd read about this a few years ago:

    https://ascopost.com/issues/november-25-2019/breast-cancer-treatments-targeting-estrogen-may-be-putting-patients-at-risk-for-long-term-comorbidities/

  • maggie15
    maggie15 Member Posts: 997
    edited April 2023
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    oldladyblue, One of my 13 reasons to skip AIs was the 40% reduction in recurrence for healthy eating and exercise. I told my MO that if I couldn't exercise due to joint pain, arthritis and osteoporosis I wouldn't be able to have that benefit which is equal to that from AIs. All your positive progress is wonderful!

  • racheldog
    racheldog Member Posts: 209
    edited April 2023
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    Threetree, I have thought about you since I followed your posts before you became Stage 4. I get very down thinking about this juggling in my mind as to whether I need to restart the AI drugs. At 70 yo I cannot fathom feeling like crap (like I did when I tried Letrozole) for the next 5 years. I also had a 2nd knee replaced and I am still not back 100% on that. First knee was very easy and this one is not. The answer your oncologist gave you about AI and heart issues was deplorable. Shows how each specialty just stays in their own lane these days, has their own protocol and that is that.

    There are now two --2020 and 2021 ---articles from Cardiology journals stating their studies and how AI drugs effect the heart. Mostly heart failure progression. Was bad enough to get left sided heart radiation but I did that. Three tree, I hope you are feeling ok and am curious as to what they are throwing at you now? Tolerance of any new drugs? I live alone and think about side effects in the middle of the night, etc. a lot. At 68 I was working a hard, full time job, was active and the last two years I feel like I have aged so rapidly.

  • quinnie
    quinnie Member Posts: 113
    edited April 2023
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    I've been reading this thread for awhile. I too was considering stopping my AL. My issues are not severe but bothersom. Painful hands, shoulders but thankfully not weight bearing joints. Weight gain, fatigue, increased blood pressure, and cholesterol. I had no issues with these things before taking AL. The hot flashes are horrible and embarrasing but...no one dies from hot flashes. I have 2 years left and as you can see I was low grade, low stage and very small. I too worry about heart issues especially since I had radiation on the L side. I believe as many of you said it is a crapshoot and are we willing to take the chance when it might not even be a chance. Love to you all and hopefully we can make the right decision.

  • threetree
    threetree Member Posts: 1,426
    edited April 2023
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    Racheldog - I really know what you mean about the AI's. I just turned 70 in late December, then the following month I got the stage 4 diagnosis - what a great 70th birthday present (not). Even when I started the AI at 67, I couldn't fathom feeling like crap for the next 5 years. I can't imagine having to do knee replacements at the same time, and am sorry to hear you aren't quite up to snuff with that yet. I hope it gets to what it should be and soon.

    Re my oncologist and her comment: I still see her, but am going to look for 2nd and maybe even 3rd opinions.

    Yes, it seems like more and more is coming out now about the cardiovascular effects of these AI's and it is very worrisome. Are we supposed to trade dying from breast cancer for dying from heart failure? Some chemo like Adriamycin causes heart trouble too. Like you, I had left sided radiation also. At this point I am not taking any new meds, but will be by the end of the month. It is taking almost 3 months from the initial stage 4 diagnosis in the ER to where I will actually be getting some kind of treatment. Had to get scans and then a bone biopsy, and the results from the biopsy still aren't in; expected maybe at the end of the week. I'm to see the oncologist in the middle of next week, and then I think she will tell me about new drugs, once she has biopsy results. I am absolutely dreading it all. Again, our choice seems to be dying sooner of breast cancer than if we take the drugs (maybe) vs getting more time, but being miserable and maybe dying of drug toxicity.

    While I don't know a lot about these stage 4 drugs, from what I do know, it looks like they give you a CDK4 inhibitor like Ibrance, Verzenio, and Kisqali, along with another AI type drug. Looks like they give them in pairs, until they no longer work and you are out of options. They all have terrible side effects from what I'm reading. I get some comfort and hope though, having heard from some of the other people on here who take those drugs and are doing relatively OK with them.

    I live alone too, and like you over these last few years, I have found that I can do less and less all the time, and it's been ever since the original chemo. Now it's getting worse with the stage 4, and I imagine those drugs I'm about to experience will just make it worse yet. There are just so few options out there for us really. They talk all these drugs up pretty big, but the reality is that they can add to your problems big time, even if they do slow the cancer down.

    Quinnie - I sincerely hope you are able to make a decision that you are comfortable with. It is just so hard!

  • AKJ
    AKJ Member Posts: 115
    edited April 2023
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    threetree, I’m taking Verzenio and Letrazole and am not having terrible side effects. Not everyone does. Tiredness and a bit of digestive distress but not bad. Maybe you’ll handle it just fine.

  • threetree
    threetree Member Posts: 1,426
    edited April 2023
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    Akj - Thanks so much. That's the sort of stuff I need to hear. I'm just so scared of what's ahead.

  • threetree
    threetree Member Posts: 1,426
    edited April 2023
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    Racheldog - I meant "left sided radiation" like you, not right. I edited my post above to show that.

  • meow13
    meow13 Member Posts: 1,363
    edited April 2023
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    In hindsight, I wish I never took the AI drugs. Been off for years and still can feel occasional achy joints.

  • thairpist
    thairpist Member Posts: 4
    edited April 2023
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    Yes, I stopped after 3 years of Hormone blockers. I've been off of them for 15 months. I tried all 3...i had horrible joint pain. After being off of it my pain went away. However, i am now currently being dianosed with Bone Mets. I have lytic lesions on my spine and sternum. I will have PET scan on Monday. I can't say whether or not I would have had mets if I had stayed on them. Now I will be put back on them with other meds as well. I am going to see a Palliative care doc to see if he can help with pain management to make it doable. I had a double mastectomy in 2018, DIEP reconstruction 2020. I did chemo & radiation as well. It is discouraging, however I am happy I might not have to do chemo again!

  • threetree
    threetree Member Posts: 1,426
    edited April 2023
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    Thairpist - I've only ever taken one AI (Letrozole) for three years, but only every other day due to side effects. I couldn't see the point in switching to another, because as what seems to have happened with you, I figured I just be trading one mess for another from what I read about many others' experiences. I was recently diagnosed with lytic lesions to my spine, ribs, and sternum, and I too will never know what role the AI may have or may not have played in all of this, because this same thing happens to people who take those AI's exactly as prescribed, as well as those who don't take them at all. There's no telling. I get to learn which new drugs they're going to recommend next week. Dreading what I am sure will be another AI type drug among the mix. All those drugs cause me pain and terrible "psychological/emotional" side effects. It's seems like the mets now just recently have started causing me a lot of pain also. I'm afraid that a palliative care person would just offer me more drugs that will have more awful side effects. I will be curious to see how your experience goes. When you say you won't have to do anymore chemo, do you mean like AC-T type chemo? It's my understanding that some of these drugs for the mets are not only AI's but also "chemo" of sorts and some you can take orally, but others are still infused, injected, etc. and have bad side effects.

  • racheldog
    racheldog Member Posts: 209
    edited April 2023
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    Thairpist.....what was your original diagnosis , path and tumor size, etc? I do not see any description on your profile. Another thing I wonder is all the "ups and downs" of the stopping and re-starting of these AI drugs causing more harm than good. Estrogen levels up and down contributing to causing cancer to metastasize? Will never get a straight answer from any MO on that question.

    There are not enough gals on this forum to post whether they never went on them and never got any recurrence or spread?

  • thairpist
    thairpist Member Posts: 4
    edited April 2023
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    hi, I didn't realize by diagnosis was marked private...I'm new again since mets has been diagnosed. I have it public now, sorry about that!

  • thairpist
    thairpist Member Posts: 4
    edited April 2023
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    yes I mean AC-T...I haven't started new regimen yet. Hopefully side effects won't be horrible. Next week will tell me a lot after PET scan and biopsy.

  • inthesage2
    inthesage2 Member Posts: 17
    edited April 2023
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    Princessbuttercup Sounds like your oncologists were not very supportive. I decided not to take hormone therapy. I saw a naturopath who tested my estrogen levels and they were very low, and she'll test them every 6 months to monitor. I was dreading seeing my oncologist to tell him about my decision. He was very supportive and told me we'll just monitor. There is also a blood test that can monitor for breast cancer that he can do every 3-6 months along with the usual MRI/mammogram. I am glad you are seeing another oncologist. Also in regards to tamoxifen (which I couldn't take because of pelvic pain), you can take 10mg. dose instead of 20mg. In Europe there is a study showing 5 mg. is just as effective.

  • mavericksmom
    mavericksmom Member Posts: 1,199
    edited April 2023
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    thairpist, reading your post has me very concerned. I am worried about possible bone mets. I would love to know if you felt a difference between the pain you felt when you were diagnosed with bone mets, as opposed to when your pain was from Letrozole. How were you diagnosed with bone mets if you haven't had your PET scan yet? As much as I know about breast cancer, I know very little about mets or the tests used to diagnose mets. I am trying hard not to jump to conclusions, but I guess we all do at times when dealing with breast cancer!

    I am just now recovering from surgery for my third breast cancer diagnosis, but having it three times did not make me an expert! I feel like I had breast cancer for the first time.........three times!

  • buzzbomb
    buzzbomb Member Posts: 45
    edited April 2023
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    posting again in regards to my follow up bloodwork after quitting tamoxifen.

    Bloodwork in October, after four months of tamoxifen, was strange. Dangerously elevated b12 (I take no supplements), A1C 6.5 (officially diabetic) fasting glucose 7.0 and an elevated TSH (thyroid, i do have Hashimotos but this level was very elevated compared to previous five years of tests).

    Bloodwork as of yesterday. TSH is back to normal! No more elevated b12, normal range. A1C is 6.0 (was hoping for lower…need time, trip to India didn’t hel). Fasting glucose 5.9. ( sorry, these are Canadian measurements) And a big bonus, my GFR (kidney function) improved by 13 points! Im attributing that to my low carb diet but still thought I’d throw that in.

    In my opinion I absolutely made the right choice ! I am beyond thrilled to see my bloodwork return to normal levels.

    Follow up mammogram set for august.