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Has anyone quit or reduced dosage of the hormonal therapy?

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Comments

  • debal
    debal Member Posts: 600

    Hi everyone, These drugs are definitely a bummer. Just sharing my experience. I switched to the TEVA brand of anastrozole and noticed an improvement in the joint pain. I believe the fillers in each brand can be different. For me, the 7 month mark was the worst. I was sliding my hand down the wall for balance when going down the stairs. It was awful. A friend recently started on it and i'll be darn if she had it rough at the 7 month mark too. I continue to take claritin since chemo for neulasta pain. I'm afraid to stop since in case it is helping. I use replens a couple nights a week for vaginal dryness. Its estrogen free. Even.if sex life is on hiatus it helps the dryness which.is important. Still taking biotin alternating with hair skin and nails vitamin for some hair thinning but its not too bad. Hang in there everyone. Its definitely not easy

  • margun
    margun Member Posts: 385

    i had done joint pain but was manageable. But a few days ago my thumb gets stack or snap to straighten. Something have to straighten my thumb with my other hand. It is trigger finger sign? It will go away by itself? I am scared because this affect my hand functions. I am taking letrozole for a bit more than a year and I hope this is not a sign that my joins will malfunction one after another. Any advice how make it better. There is anyone who’s trigger finger got better over a short time

  • happycook
    happycook Member Posts: 7

    Hi abigailj and all! Was wondering on your hormone suppression, AI's decisions. I was diagnosed in June, surgery in July. Nothing like 6 months to make up my mind, on whether I want to start taking Arimidex!..have the bottle sitting on my nightstand. MO's think it's a no brainer to take it. I appreciate their expertise, opinions, etc, and they want to stop cancer recurrence by the best means available. However, the SE's seem so intense and debilitating for so many. I wonder if cardiologists, neurologists, endocrinologists, etc. would be as "on board" with the AI's, but of course I'm thinking they really aren't able to contradict a recommended treatment once cancer appears.

    I also stopped hormone replacement therapy which I was on for 10 years,( I'm now 64 ) bad idea cancer wise I suppose. It probably did help my heart/blood pressure and also my bones, as my range is good, femur better than average. But I also exercised, ate fairly healthy and maintained weight. After stopping hormone replacement at diagnosis, my blood pressure is consistently high and have some mild to moderate hot flashes, definite dryness in the "lady region" and thinning hair. I've asked about getting my hormone levels checked, and 2 doctors were dismissive and said it wasn't "standard of care". I'm seeing an endocrinologist this week who is not associated with the hospital dr.'s that I'm seeing now, and will request tests be taken. I'll of course share that with my dr. team, and all of you for relevance.

    In the meantime, I've been exercising more, since my dr. said fat produces estrogen. Also cutting sugar back, and taking curcumin ( active ingredient in tumeric, many studies on it on NIH website), vitamins K2 and D3.

    I guess there are women that suffer little to no se's, on the AI's, and aren't the ones that would typically be on a forum like this. But anyone with any advice or experience is truly welcomed and appreciated. Hugs to all! we are stronger together:)

    I thought there was a place to input data, but here's mine:

    Dx 6/2020 IDC with lobular features left 3cm Stage 1 Grade 2, 0/3 nodes ER/ PR+ HER2-

    Surgery 7/2020 lumpectomy

    Radiation left breast 3 weeks




  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435

    happycook, welcome.

    To your comments, yes there are some people who experience severe side effects from AIs, but there are also people who experience manageable side effects or hardly any side effects at all (I'm one). You won't find many of those people in this discussion thread, but you will find some of them here:

    Topic: Doing Well on Aromatase Inhibitors (AIs) https://community.breastcancer.org/forum/78/topics...

    .

    Until you try the AI, you don't know what your side effects will be. So making a decision to pass on AIs because of what other people have experienced is short-changing yourself.

    As I posted previously in this thread, to my way of thinking, the real question on whether or not take AIs (or Tamoxifen) relates to how much benefit you will get. And that is different for everyone - it is very specific to your diagnosis and your age. This should be a discussion between the patient and her MO, focused on the following questions:

    1. What are the risks of recurrence (metastatic and local - 2 distinctly different risks) without these meds?
    2. How much are these risks reduced by taking anti-hormone therapy?
    3. Based on the patient's health profile and experience (if they have already been taking the meds), what is the nature and risk of side effects and quality of life issues?

    .

    Did you have an Oncotype test done, and if so, what was your score? Although it requires a bit of reverse math, your Oncotype recurrence risk will answer the first two questions as they relate to metastatic risk. And if you have your score, you might want to supplement that by asking your MO to run the Oncotype RSPC model, which is a quick computer model that refines and personalizes the recurrence risk associated with each Oncotype score by incorporating patient age, the size of their tumor and the grade of their tumor.


  • BlueGirlRedState
    BlueGirlRedState Member Posts: 900

    HappyCook - I hope SEs are none to minimal for you. I was also told that checking estrogen was not part of the standard of care , but I do wonder how much the AI is doing. Initially brand name Arimidex did not have the SEs of generics, but after 15 months I am starting to notice stiffing hands, especially in AM when I wake up, and a locking finger. I might try and see a gynocologist to find out why bike riding is so uncomfortable, even with good bike shorts. Is it the dryness, and is there something I can do about it? I do not know if other AIs have these effects and it probably varies for each person. I am something like 80+ percent for ER tumor, but with the SEs question the balance of not feeding the tumor and the stiffening hands, thinning hair, and probably bones as well. Not sure when I am next due for bone scan. I think the stiffness and hair is the Arimidex rather than just getting older (almost 63). The SEs do seem to be a spectrum, with some experiencing almost none, others, debilitating. I am not as rigorous with staying hydrated and active as I was pre-pandemic, stretching and weight lifting have definitely fallen off the track. Probably closer to 5-6 glasses of water vs 8-10. Stretching 2-3/week vs 5-6. Stilll get out for walks, hikes, x-country daily

  • harley07
    harley07 Member Posts: 363

    Beesie - you mentioned asking the MO regarding the risks of recurrence (Mets and local) without AI's. When I met with the MO a few weeks ago she said she didn't know what my risks are which I found odd. My Mammaprint is low risk. I will be starting an accelerated course of radiation in January (5 treatments) and then meet with the MO again in February. I'm leaning against taking AI's (I'm 63) because of the side effects and current concerns with arthritis. My RO is horrified I am considering not taking an AI. Since I thought the hormone therapy is under the purview of the MO, I was surprised the RO was even asking about AI's. The questions you noted would help me greatly to make an informed decision.

    This is all still pretty new to me as is dealing with multiple doctors. I feel like she is brushing me off so I'm trying to figure out another way to approach her to get the information I need. Any suggestions? Thanks!

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435

    Harley, with the Oncotype score, the patient receives information about their risk of recurrence assuming they take an AI or Tamoxifen. Since these meds reduce the risk of mets by approx. 1/3rd, the reverse math to figure out one's risk of recurrence without the AI or Tamoxifen is pretty simple. I don't know much about the Mammaprint results so I don't know if the same thing can be done.

    Have you tried CancerMath or PREDICT? With both models, you can input your age and diagnosis data, and then add in AIs as a treatment. This will allow you to see the impact of the AI on your recurrence risk.

    http://www.lifemath.net/cancer/breastcancer/therapy/index.php For easiest interpretation of the results, I'd suggest you select "Pictogram" in the Display As dropdown menu.

    https://breast.predict.nhs.uk/tool Once you input your diagnosis, the treatment options input section will show up. Here I would recommend the Icon view.


  • harley07
    harley07 Member Posts: 363

    Thank you Beesie

  • happycook
    happycook Member Posts: 7

    Beesie, I appreciate the info on the aromatase group that is doing good as far as side effects..I will be looking at that link. My oncotype was a score of 9. The recurrence score with AI was 3%, he said it would be 6% without AI therapy. I told him if I began the therapy, I'd like to take every other day. He seemed to be ok with that, I think he could tell that I was really serious about not taking anything. I appreciate your advice, seems like you and several others are wonderful that way!

    Best, happycook

  • happycook
    happycook Member Posts: 7

    Hi bluegirlredstate, We seem to be on the same page as far as wanting to know more about hormone levels. I think it would be helpful before, during and after treatment...but who knows for sure how relevant that info is in the big picture, or the details. My estrogen positive receptor status is also 80%. I am going to try to stay active and hydrated also, thanks for the advice. I actually had kidney stones a few years back, probably from lack of hydration...oh, and also too much espresso and chocolate!. Also I switched to my cancer group's gyn, and she prepared me for the dryness issue. I think at that point I was only half listening as it wasn't a problem then. I'll have to ask again what product is best to use. She mentioned not being in favor of premarin, which I wouldn't use anyway because of not only adding estrogen to my body, but also the pregnant mares abuse.Thanks for your help.

    Best to you:)

    happy cook

  • BlueGirlRedState
    BlueGirlRedState Member Posts: 900

    happycook - it is probably not the chocolate, as long as it is not "a lot" and preferably dark, or expresso. Hydration is important. I've heard estrogen based creams are a big No No for ER+ cancer, but I do wonder what a good long term one would be. I have yet to see a gynocologist to see if that is the issue for bike riding or if something else is going on. Maybe a recumbant bike is the answer.

  • abigailj
    abigailj Member Posts: 109

    Hi happycook - to answer your questions, I decided against AIs for myself based upon these factors - I have a low oncotype score (5 on the ILC side, 11 on the IDC side, yeah, I had a different cancer in each breast...), and my cancer is moderately ER/PR positive also I'm 63 and like you took low dose HRT for 10 years, basically until I was diagnosed and of course had to quite, and I experience AIs for 3 months after I was diagnosed but my surgery had to be deferred due to COVID earlier this year - I was already experiencing side effects from using them (yes, some were because I could no longer take HRT but after my surgery when I was no longer taking an AI those affects were far less so I concluded that for me a lot of it was due to the AI rather than giving up the HRT). Another part of the reason I made that choice is that the surgery I chose was very extensive and has a long recovery period and I did have a few complications and am just now feeling pretty much as good as I did before. Yes, it's possible I may change my mind in the future but first I need to find another MO since the one I was assigned by the hospital is very dismissive of me given this choice I've made so doubt she even wants to continue seeing me as a patient...

  • jrnj
    jrnj Member Posts: 408

    abigailj, That so sad that Drs. treat people that way. Is it really a "choice" to quit a drug that causes horrible pain and insomnia. I've wanted to be aggressive the whole time and pushed for chemo, but I can't tolerate these AIs. I'm in horrible pain, it's debilitating and making me crazy. I think you go to MSK correct? I often consider switching to them. I still hate all my Drs., they make tons of mistakes and don't tell me anything, but the one thing I like about my MO is he is flexible. If I ask him to try something different he usually agrees. I think MSK Drs. are probably more inflexible. I'm going in Monday to ask for Femara, my third AI. I don't think he'll be happy, I hope he says yes. But I'm not holding out much hope it will be any better than the last three. I've been off Arimidex for a week and am still in a lot of pain. When I went off Aromasin, I was better in 2 days.

  • abigailj
    abigailj Member Posts: 109

    Hi JRNJ - I’ve been going to Weil Cornell for all the BC care and was happy with my BS (was discharged from her care after I recovered from surgery) and my PS (still inhis care for some cosmetic fat grafting next year) but do need another MO that will work with me on this. Don’t know if the doctors at MSK consider anything beyond the ‘standard of care’ course of action. But I’m hoping I can find a qualified MO somewhere in the Ny metro area who will be more flexible. I’ll let you know if I find someone. I welcome any recommendations anybody here may have of course.

  • BCat40
    BCat40 Member Posts: 121

    I think Salamandra might be at MSK?

  • jhl
    jhl Member Posts: 175

    The reason estrogen levels are not monitored when on aromatase inhibitors is because AI's do not affect circulating blood estrogen, which we know is low in post-menopausal women. This has been shown by a number of studies that have actually looked at this. AI's inhibit the enzyme estrogen synthetase. Estrogen synthetase converts androstenedione and testosterone into estrone (E1) and estradiol (E2). In post-menopausal women this process of aromatization of androgens into estrogens takes place in the periphery - liver, fat, muscle, skin & breast tissue; not in the blood. The feedback loop of leutinizing hormone triggering the ovaries to produce estrogen has already been significantly reduced via menopause. By adding an AI, the estrogen synthetase is inhibited and the peripheral production of estrogen from androgens & fat are reduced in liver, muscle, skin & breast tissue. The blood estrogens are as undetectable after an AI as they were before the AI.

    Research has been & is still going on to see if monitoring AI levels themselves might be a valid test. However, there is no current clinical test outside of a research facility that does that. There is speculation there might be rapid AI metabolizers which might be a cause for a recurrence of breast cancer. However, at this time, there is just no way to monitor blood estrogens so it has any relevance to treatment decisions because the suppression goes on within the tissue itself, not the blood.

  • peregrinelady
    peregrinelady Member Posts: 416
    Jhl, thank you for your detailed explanation.
  • flashlight
    flashlight Member Posts: 311

    Hi JRNJ, All the meds you have been on seem to have the same side effects. Have you considered Tamoxifen? breastcancer.org/treatment/hormonal/comp_chart ( hormonal therapy comparison chart) I started out having terrible bone type pain on 20mg, but after lowering my dose and slowly building up I am doing well now. I also divide the dose 10mg in AM and 10mg in PM. Hope 2021 is a better year! Best wishes.

  • Lucan
    Lucan Member Posts: 1

    I tried all 3 AIs and Tamoxifen. Too much pain with the AIs, especially my hands, and Tamoxifen caused GYN problems as I'm post menopausal. I ran into the same rigid, dismissive attitude with the oncologists at the hospital where I had my surgery, so I am changing drs. It makes me angry as I feel they would rather dismiss the side effects than prescribe pain meds or send me to pain management.

  • jrnj
    jrnj Member Posts: 408

    abigailj and BCat40, Thanks. I'm in central jersey. I went for a second opinion in the Middletown facility, the city is too far. I stayed with my local MO.

    flashlight, yes, I consider Tamoxifen my last resort because I saw a study that said it may not work as well for ILC, as much as 20% difference in the study I saw, and the MSK dr. recommended AIs, even though I only saw her once. My Drs. think this is not true and only different by a small amount, but I think MSK Drs. are more knowledgeable of all of the studies and I don't think my Drs. are knowledgeable of ILC specific differences. Confused and scared to make a wrong decision. Thanks for the good wishes!!!

    jhl, that is a great explanation, thanks!!! I wish I had Drs. that would tell me stuff, they tell me nothing. And I'm the kind of person that wants to know everything. Explains why my arm muscles started hurting so much after starting Arimidex and getting my ovaries out I guess.

    Why are some people in so much pain and others are not? Are people who did chemo more likely to have bad side effects from AIs? My arms started going numb at night right after chemo and before AIs.

  • salamandra
    salamandra Member Posts: 751

    Hello,

    Yes, I'm at MSK, and was able to change from tamoxifen to toremifene.

  • BlueGirlRedState
    BlueGirlRedState Member Posts: 900

    JRNJ - I think you've just asked the million dollar question - why are SEs so much worse for some people than other people. The sister question to this is why is treatment more effective for some, than others. Does it really boil down to the uniqueness and variation in cancer and individuals? Comments on this site are really helpful in affirming experiences and what seems to help. What helps.......... that seems to vary a lot as well.

  • cinniegirl
    cinniegirl Member Posts: 1

    I just saw this - sitting up late at night trying to decide if I want to stay on Arimidex. I can’t take the side effects anymore and I sometimes feel like it’s not helping me anyway. You see I had DCIS in 3 areas of my left breast with micro invasion in 2013. ER+ Had lumpectomy, then additional surgery (wasn’t clear) and then radiation. Went on Tamoxifen for 1 year then developed bleeding so I went on Letrozole. In 2018 at a routine mammogram another cancer discovered, this time right breast 1 cm., another ER+ High oncotyping score. Another lumpectomy with clear nodes, but then radiation and chemo. Now on Arimidex and I have never felt so crappy in my life. But my point is I have been asking everyone why didn’t the Letrozole work and no one can give me an answer. If that didn’t work how do I know Arimidex will? Again no answers and I’m dealing with a very prestigious university hospital. So thanks for posting I’m going to look into this.

  • threetree
    threetree Member Posts: 1,740

    jhl - Hi - I am struggling to understand this issue about measuring estrogen levels while on an AI. I believe you are saying that in post menopausal women, circulating estrogen levels are essentially low/undetectable due to menopause. If that is the case, how did all of the original studies on Femara/letrozole, done by Novartis I think, figure out that anything over .5 mg seemed to reduce estrogen levels to nearly undetectable amounts? Were post menopausal women not included in those studies? My assumption has been that they tested circulating blood levels of estrogen to make their determinations as to what dose works. I have always assumed that circulating blood levels in test subjects were what demonstrated the benefit that Novartis claimed. If they didn't test circulating blood levels, because they are already nearly undetectable in post-menopausal women, what and how did they test for estrogen levels in the test subjects?

    I get what I think you are saying, but it doesn't seem to match up with what I believe Novartis has said about how they determined dosages based on estrogen level checking that they did. It seems that they would have had to have measured blood estrogen levels of their subjects while they were on the AI.

  • happycook
    happycook Member Posts: 7

    Hi Abigailj, I respect your decision, it's not an easy one to make. I would like to say my remarks about my medical onc. being dismissive, was just about the part of getting blood tests to check hormones. Further along in the posts, there is a great answer by JHL as to the reasons why it isn't done. Seems like it has a lot to do with estrogen being produced from fat and androgens in liver, muscle, skin and breast tissue. But still hoping you are able to find good support with another MO., that's very important for your well being.

    I've decided (for now) to take the anastrozole every other day, and maintain my exercise, good nutrition, supplements, and hope for the best. I know that I can stop if the se's are awful for me, or the AI can be changed to another. I keep in mind what Bessie said in that there are women who experience little to no side effects. I also think the physicians at Fox Chase (Phila. area) are amazing and highly recommended. I probably tortured them with questions, as I'm one who likes to understand as much as I can, but that's how I roll..ha, ha

    I'll keep in touch if you don't mind, hope you do the same.

  • whatjusthappened
    whatjusthappened Member Posts: 178

    Hi all, I just wanted to post the results of my self-imposed "experiment". Since I started anastrozole right after my ovaries were removed, I never was really able to tell which side effects were from the medicine and which were from the surgically induced menopause. I've been on several breaks from the anastrozole since then, but they didn't result in any real relief from symptoms. So this time I went on a longer break (about six weeks so far), and I have finally reached a point where my symptoms are much better, especially the pain. I do still have hot flashes, but they are not as severe. My plan is to start back on the anastrozole now and make note of which symptoms start back up or worsen. I'm finding myself very reluctant though and I keep putting it off. I'm like a ping-ping ball with this decision.

    While I would not wish these symptoms on anybody, I really appreciate all of you posting your own struggles and ideas here. It is such a relief to know that this is not all in my head and that there are others who deal with the same issue.


  • jhl
    jhl Member Posts: 175

    Hi ThreeTree,

    I'm sorry I didn't see your question until now. As far as the Novartis studies as well as the Astra-Zeneca & Pfizer studies on aromatase inhibitors, the work that is done on the ultra-low estradiol levels were done in a research laboratory. These laboratories work with those in university settings that frequently include medical schools and more importantly, pharmacy schools. If you look at the article I attached, there is work being done on how we can correlate ELISA (enzyme linked immunosorbent assay) with LC-MS/MS (liquid-chromatography tandem mass spectrometry), which is the most accurate method of detecting ultra low levels of estradiol. The LC-MS/MS is only done in a research laboratory - which is what the drug companies use. However, it is not a method which can be used in a regular clinical laboratory. The ELISA assay is one that can be done in a regular clinical lab, but there are a variety reasons why the results do not correlate. The university labs, particularly associated with pharmacy schools, have access to these laboratories that those of use who are treated as clinical patients do not have. I hope that helps explain how difficult this is. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC56848...


  • threetree
    threetree Member Posts: 1,740

    Hello Jhl - I'll look at the article in a little bit (it's still early here on the West Coast). I have a feeling it might be a bit beyond me from what you have described, however. I thought they eventually did these tests in real people, i.e. moved from labs to real subjects. How do they know if it works outside of a lab then?

  • 5catlady
    5catlady Member Posts: 2

    Anyone with stage 0 grade 2 DCIS lumpectomy and radiation refuse anti estrogen anastrozole

  • jhl
    jhl Member Posts: 175

    Hi ThreeTree,

    I am on the west coast as well, Northern California to be specific. Most drug development is associated with universities that have schools of medicine and schools of pharmacy. The one closest to me is also the one who has received the most NIH funding for drug development - University of California, San Francisco so I will use that one as an example. The first phase is discovery & development. This is done primarily by these university labs or private labs associated with a university. Genentech works closely with UCSF. This phase looks to find the best dose of the drug with the fewest side effects. The second phase is safety and efficacy. This phase is done in humans so this is where you will find early examples of drug, tissue or blood levels. At this phase, the clinician will obtain whatever specimens have been delineated for a particular drug and send them off for specific testing - to a university laboratory. These are research laboratories not clinical labs like Quest or LabCorp. The final phase of testing is phase III. This phase compares the new drug to the current standard of care. These trials enroll hundreds to thousands of patients to assess if the drug is either superior or non-inferior to the current standard. Again, any blood or tissue sampling is done in a research laboratory to keep the testing portion equivalent.

    It normally occurs in phase II where it is discovered that blood/tissue drug levels are important or not in evaluating or monitoring the drug. For example, for phenytoin (used for seizure disorders) the drug level is important to monitor for side effects. For vancomycin (antibiotic) the drug level is important for efficacy. It is at this phase of development when the research laboratory will determine the clinical laboratory parameters that must be used for that particular drug.

    For the AI's, the blood/tissue levels do not correlate between the research numbers (LC-MS/MS) and the clinical laboratory numbers (ELISA). That is the norm for most drugs and is not required for delivering a safe and effective dose. There are lots of universities which conduct drug studies. On our coast, University of California, San Diego and University of Washington are also leaders. There are several across the United States in addition to these and all of them communicate with each other and often are involved as clinical trial sites. So, yes, these studies are carried out in real people with testing done in research laboratories. But, not all of them require a clinical laboratory to monitor the drug. This is why your oncologist will say "it's not the standard of care".

    Jane

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