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Rejecting hormone therapy

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  • Tapwater33
    Tapwater33 Member Posts: 4
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    Moth I agree it’s a crapshoot

  • Tapwater33
    Tapwater33 Member Posts: 4
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    MY HAIR!!I just really want to know about my hair. I stop taking Famara and Zoladex about four months ago (I was only taking it for about four months ) and my hair was falling out along with other side effects but my hair concerns me the most I want to know how long it takes for it to grow back or start growing back it has been the most distressing side effect to me. Cry every time I go to the bathroom and look in the mirror

  • ruthbru
    ruthbru Member Posts: 47,028
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    I was on Arimdex for 5 years without bone loss. I attribute that to several things (including good luck).

    *I ate a serving of dried plums (ie prunes) every day. Prunes can actually build bones.

    *I did 8 hours (at least) of exercise a week. Walking, running, dancing, light weights etc.. As someone said, it needs to be something that 'pounds' your bones, so biking, swimming, roller skating etc. don't 'count' for that. (Great for their other health benefits but not for bone health.)

    *I made sure to eat some dairy every day and took 3 calcium chews (get the ones that add Vitamin D).I also tried to eat spinach, fish etc. every week.

    *I maintained a healthy weight.

    * I did have a DEXA going in, and my GP (who knew how to write things up so insurance would pay for it), ordered a yearly DEXA while I was on AIs. That way if things had started to go bad, I could have nipped it in the bud. I imagine I would have tried one of the bone building medications because I was committed to doing those 5 years.

    * Unless you actually have osteoporosis, I would definitely try the above tips first.

  • threetree
    threetree Member Posts: 1,349
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    Ruthbru - Thanks so much for posting your regimen! You've become a bit of my heroine with regard to this bone density and AI business. I'm determined to try other things first before bisphosphonates. I mention you and the prunes to others when this issue comes up, but I had actually known only a little of what you had done, so I really appreciate the added details, and I'm sure others will too.

  • ruthbru
    ruthbru Member Posts: 47,028
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    If you are interested, here's the science behind the prunes:

    When it comes to improving bone health in postmenopausal women — and people of all ages, actually — a Florida State University researcher has found a simple, proactive solution to help prevent fractures and osteoporosis: eating dried plums.

    "Over my career, I have tested numerous fruits, including figs, dates, strawberries and raisins, and none of them come anywhere close to having the effect on bone density that dried plums, or prunes, have," said Bahram H. Arjmandi, Florida State's Margaret A. Sitton Professor and chairman of the Department of Nutrition, Food and Exercise Sciences in the College of Human Sciences. "All fruits and vegetables have a positive effect on nutrition, but in terms of bone health, this particular food is exceptional."

    Arjmandi and a group of researchers from Florida State and Oklahoma State University tested two groups of postmenopausal women. Over a 12-month period, the first group, consisting of 55 women, was instructed to consume 100 grams of dried plums (about 10 prunes) each day, while the second — a comparative control group of 45 women — was told to consume 100 grams of dried apples. All of the study's participants also received daily doses of calcium (500 milligrams) and vitamin D (400 international units).

    The group that consumed dried plums had significantly higher bone mineral density in the ulna (one of two long bones in the forearm) and spine, in comparison with the group that ate dried apples. This, according to Arjmandi, was due in part to the ability of dried plums to suppress the rate of bone resorption, or the breakdown of bone, which tends to exceed the rate of new bone growth as people age.

    The group's research, "Comparative Effects of Dried Plum and Dried Apple on Bone in Post Menopausal Women," was published in the British Journal of Nutrition. Arjmandi conducted the research with his graduate students Shirin Hooshmand, Sheau C. Chai and Raz L. Saadat of the College of Human Sciences; Dr. Kenneth Brummel-Smith, Florida State's Charlotte Edwards Maguire Professor and chairman of the Department of Geriatrics in the College of Medicine; and Oklahoma State University statistics Professor Mark E. Payton.

    In the United States, about 8 million women have osteoporosis because of the sudden cessation of ovarian hormone production at the onset of menopause. What's more, about 2 million men also have osteoporosis.

    "In the first five to seven postmenopausal years, women are at risk of losing bone at a rate of 3 to 5 percent per year," Arjmandi said. "However, osteoporosis is not exclusive to women and, indeed, around the age of 65, men start losing bone with the same rapidity as women."

    Arjmandi encourages people who are interested in maintaining or improving their bone health to take note of the extraordinarily positive effect that dried plums have on bone density.

    "Don't wait until you get a fracture or you are diagnosed with osteoporosis and have to have prescribed medicine," Arjmandi said. "Do something meaningful and practical beforehand. People could start eating two to three dried plums per day and increase gradually to perhaps six to 10 per day. Prunes can be eaten in all forms and can be included in a variety of recipes."

  • threetree
    threetree Member Posts: 1,349
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    Also, there are some studies out there in addition to what Ruth mentions that said they have since re-crunched some numbers and instead of needing 10-12 per day, half that amount, 5-6 will produce the same results. I've been doing 6, but won't have a new scan for sometime.

  • ruthbru
    ruthbru Member Posts: 47,028
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    I just did whatever the box said was one serving. Usually 5 or 6 prunes depending on their size.

  • lillyishere
    lillyishere Member Posts: 770
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    Thank you for sharing this info Ruthbru. I thought prunes only helped with constipation. Who knew their delicious taste helps with the bones too.

  • KateHanni
    KateHanni Member Posts: 70
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    Thanks Jane. My husband and I are taking nice long walks daily and we are adding calcium, Omega 3's and D3 to my regimen to try to build back the bone density I've lost!

  • KateHanni
    KateHanni Member Posts: 70
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    Let me know/us know what you decide. I've read thousands of blog spots all over the world about this issue and it's a huge issue. Also the clinical trials for exemestane and anastrazole both showed nearly 50% of the participants stopped taking the drugs early and of those that stopped nearly all went incommunicado as to why they stopped but the assumption was it was related to side effects. I'm back on Aromasin Brand and dealing the best I can with the depression and extreme fatigue that believe it or not is a big improvement over the anastrozole and having every side effect listed (except of course death)...

  • princessbuttercup
    princessbuttercup Member Posts: 159
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    I don't think that we can build back bone density, but we can try to prevent losing it.

  • racheldog
    racheldog Member Posts: 209
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    I wish there were more calculators and/or predictive calculators for the risk/benefits of patients staying on these (awful) drugs. Based on inputting path reports, etc., age, etc. I think I found one but not sure how accurate it was. Had to do more with radiation.

    I am currently looking into natural substitutes for these AI drugs. I believe in the science for traditional western medicine but also think that natural medicine and supplements may have a place if AI or Tamoxifen is just not tolerated by women.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,834
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    Rachel,

    Although these drugs can have se’s for some, they are not awful, For me they have been a lifesaver as they are for many. I've been on them for 10 years. Joint pain is my worst se, but beats the heck out of metastatic progression. Yes, I do hope things improve in terms of drugs with fewer se's but for right now we have to work with what we have. Could there be better drugs? Yes but the current ones are not awful for everyone. They can belifesavers.

  • beesie.is.out-of-office
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    "Also the clinical trials for exemestane and anastrazole both showed nearly 50% of the participants stopped taking the drugs early and of those that stopped nearly all went incommunicado as to why they stopped but the assumption was it was related to side effects."

    KateHanni, as I've asked previously, please provide links to your source.

    From my reading, the large AI clinical trials had drop-out rates that were nowhere near 50% - most drop-out rates in the studies I've read were in the single digits. There was one trial of 100 patients that was reported in 2005 that had a 50% drop out rate for exemestane and anastrazole but the authors note that a number of patients dropped out in order to take chemo.

  • Cancersux2021
    Cancersux2021 Member Posts: 5
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    Mavericksmom


    Did you do radiation or chemo in 2003? I basically have same as you! I told the Radiation doctor this isn’t for me. The MO is doing a mammaprint but my genetic testing said 2.4 recurrence so hopefully the mammaprint comes back low reoccurrence. I have done the lumpectomy on Left for Idc stage 1 grade 1 no lymph nodes 1.3cm clear margins. I told the MO, QOL matters more don’t want to live miserable 10 years and still get a recurrence. But they never said anything about mastectomy. I’m thinking that is my best route without anything else! But wondering if you just opted for lumpectomy. Thank you

  • KateHanni
    KateHanni Member Posts: 70
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    Has anyone experiences extreme fatigue from their aromatase inhibitors? I feel alarmed as normally I have a very hard time sleeping, but when I was diagnosed with BC I noticed I needed to take frequent naps during the day and that went away after radiation but now with the exemestane/Aromasin Brand I'm noticing especially for the few hours after a good long nights sleep, I still feel like I need a nap and am extremely fatigued.

    Anyone else have this side effect?


  • threetree
    threetree Member Posts: 1,349
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    Kate - I wouldn't call what I experience extreme fatigue, but my AI (Letrozole) definitely makes me more tired overall and especially drowsy during the evening after I take it. I only take mine every other day (oncologist doesn't like it, but that's what I do) and I take it around 5 pm. I gradually fade for the rest of the evening following taking the pill and then I'm not real "with it" the next morning either. It isn't until later the following afternoon that I start to feel less tired/groggy etc. On the day I don't take the pill I don't get that evening slump and then the next day is fairly good all day, except for the routine aches, pains, constipation, and more that the AI causes. The fatigue and tiredness aren't nearly as bad on my off days though.

  • racheldog
    racheldog Member Posts: 209
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    I have yet to start AI's and I plan to find out what the half life of these drugs is......ie, I am on the same page with some others that if I cannot tolerate these I will first try every other day before discontinuing them. I just dread going on these. I applaud those that tolerated these but for me I already have plenty of arthritis in joints and sleep has been disruptive as I get older. I sure do not want any more issues.

    These drugs just have horrid side effects and taking away all estrogen from women causes so many internal physiologic issues. I feel as strongly as others do about radiation but I did that. These drugs, not so sure.

  • beesie.is.out-of-office
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    Since I've asked 3 times, I'm guessing that I'm either blocked or intentionally being ignored.

    Therefore, for others reading, here is the information I've found with regard to the drop-out rate of the major AI clinical trials. Is the drop-out rate problematic and higher than anyone would like it to be? Yes. But in the very large clinical trials, the rate is nowhere near 50%. If anyone has information that suggests otherwise, please do post it.

    Specifically,

    "In the BIG 98 study 50% of participants left the study due to side effects. The side effects can be deadly." Kate, Sept. 3rd

    • Actual Results: BIG 1-98 started with 8010 participants, 4003 in the Letrozole group and 4007 in the Tamoxifen group. These patients were enrolled in the study from 1998 to 2003. At the end of the study, in 2010 (median follow-up 8.4 years), 6416 patients (80%) remained in the study, with 1594 deaths or withdrawals. Overall survival during the study was ~93% (with the vast majority of deaths being from breast cancer) which would suggest that the drop-out rate was ~13%. https://breast-cancer-research.biomedcentral.com/a...


    "Also the clinical trials for exemestane and anastrazole both showed nearly 50% of the participants stopped taking the drugs early" Kate Sept. 27th

    • Actual Results, NCIC Clinical Trials Group (NCIC CTG) MA.27 trial: "Between June 2, 2003, and July 31, 2008, 7,576 patients were randomly assigned, 3,789 to exemestane and 3,787 to anastrozole.....Compliance was poor, with a 31.6% discontinuation rate (33.8% and 29.4% in exemestane and anastrozole groups, respectively) for adverse effects, concomitant diseases, or study refusal." That's certainly a high drop-out rate, but it's not 50%. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC36125...

    .

    • The ATAC Trial (original 33 month results): "9366 women from 381 centres in 21 countries were enrolled between July 12, 1996, and March 24, 2000. Of these women, 125 were found to be ineligible after randomisation...All three treatment regimens were well tolerated by most patients. Anastrozole was associated with significantly fewer withdrawals from treatment than tamoxifen, including significantly fewer withdrawals related to adverse events." Overall Withdrawal: Anastrozole 21.6%, Tamoxifen 26.0%, Combination Therapy 26.4%; Withdrawal due to adverse effects: Anastrozole 7.8% (5.1% treatment-related), Tamoxifen 11.1% (7.2% treatment-related), Combination Therapy 10.9% (7.4% treatment-related) https://www.thelancet.com/journals/lancet/article/...

    .

    • ATAC Trial (extended 47 month results): "All three treatment regimens were tolerated well by most patients. The proportion of patients who withdrew from treatment continued to be lower in the anastrozole group (24.1%) than in the tamoxifen group (28.3%) or the combination therapy group (29.4%); 5.6%, 8.1%, and 8.1% of patients withdrew from the anastrozole, tamoxifen, and combination treatment arms, respectively, because of treatment-related adverse events." https://acsjournals.onlinelibrary.wiley.com/doi/10...

    .

    To net it out, in these 3 trials with approx. 25,000 patients, the average drop-out rate was ~25%. As the ATAC data shows, the drop-out rate due to adverse side effects from the drugs themselves will be lower than this, as people drop out of clinical trials for all sorts of reasons, some of which have nothing to do with the subject of the trial itself.

    My sense is that no one reading this thread is particularly interested in this information, but I think it offers perspective for those who are concerned about the side effects of AIs and Tamoxifen. There is no question that some people are severely affected, to the point of not being able to continue with these meds. But the majority of patients do stick it out, despite the fact that most will experience some level of QOL side effects. I'm currently at 2 1/2 years on Letrozole. I do have side effects, and they seem to have become more noticeable over the past 6 months so I don't know what's ahead. But at this point, my side effects are more an annoyance and frustration (my hair!) than a huge issue.



    Note:

    BCO Community Rule #11:

    We want to hear what you think, so please, post your own ideas and thoughts. If you share something that doesn't belong to you, make sure to cite your source. This is especially important when it comes to medical or health information. Personal health experiences are just that, PERSONAL experiences, and should not be promoted as fact or general knowledge. Studies, statistics, or information that you're sharing should be sourced and cited from a reputable place. (Our organization defines a "reputable source" as peer-reviewed medical journals with a high impact factor published by an established medical association. To be considered "reputable" by our organization, any cited news sources should be essentially unbiased, mainstream outlets that follow journalistic and ethical standards.)



  • threetree
    threetree Member Posts: 1,349
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    Racheldog - This only pertains to Letrozole, but you might find some of the info below interesting.

    This shows that alternate doses of Letrozole suppress estrogen very well; the downside is that the side effects didn't really change no matter the dose or timing. I am still convinced that I feel a little bit better on the days I don't take this pill than on the ones I do. Others on here have said that they thought they felt somewhat better with less.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC47402...

    This next one discusses more than Letrozole; half lives of all three AI's and the possibility that standard doses can be too high for some older people. I thought I had seen a full text or more of this somewhere before, but this gives all the pertinent basics.

    https://cancerres.aacrjournals.org/content/75/9_Su...

    This one is prescribing information from Novartis, which makes Femara/Letrozole. It's from 2020. It's long and more than most would want to read, but look at section 12 "Clinical Pharmacology", subsection 12-2. In those few paragraphs Novartis themselves note that just about any dose of Femara/Letrozol above .5 will do the job. (Standard dose is 2.5 mg - significantly above .5!)

    https://www.accessdata.fda.gov/drugsatfda_docs/lab...

    I've used what I have read in these docs to justify, to myself at least, the every other day dosing. The half life of Letrozole is said to be 48-72 hours and I take the full 2.5 mg every other day, so I am not even close to that .5 per day level on either day, that even Novartis claims will suppress estrogen to an acceptable level.

    Again, it doesn't look like lower doses necessarily reduce side effects, however. It seems that if your estrogen has been suppressed to an undetectable level that they feel is one that will hinder breast cancer, you get the side effects anyway. Either way, I am still just happier to put less of this drug in my body overall, side effects aside. To me, the less of all the junk that goes into this to make the pill, in my body, the better.

  • ruthbru
    ruthbru Member Posts: 47,028
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    Other than being a little achy at first, I had zero short or long term side effects from 5 years of Arimdex, other than still being alive and well. For me, anti-hormonals gave me a 40% risk reduction for recurrence....double of what chemo (which I also did) gave me. I was very grateful there was something I could do beyond the initial treatments to help keep me healthy. My advice is to go into it with an open mind and adjust your plan if you need to.

  • KateHanni
    KateHanni Member Posts: 70
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    I tried the every other day approach with aromasin and although it did resolve the bone and joint pain issues (especially my neck) the days off I had less energy than the days on it. Now I'm back on it taking it every day and I feel unrealistically exhausted, even after two cups of coffee. I see that fatigue is a side effect, my concern is the feeling of this exhaustion is the same feeling I had before I had my lumpectomy and radiation which was an unsettling amount of fatigue and inability to stay awake.

  • KateHanni
    KateHanni Member Posts: 70
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    My mother was able to take anastrozole without any noticeable side effects for 5.5 years and I only took it for one week as I had every listed side effect. So it is true that women respond differently to each of these AI's.

  • KateHanni
    KateHanni Member Posts: 70
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    You are not blocked, nor is anyone arguing with you. The clinical trial I was referring to also included exemestane/anastrozole and a chemotherapy which I should have alliterated in my prior missive. It's clear that you have capacity with the clinical trial information, what's unclear is if you accept and can appreciate those who are struggling with their side effects as I and so many others are.

    My mother, who has a PHD in Economics is 85 years old and had no notable side effects with Anastrozole. When I say notable, I mean she didn't recognize she was having anastrozole induced blood pressure spikes, huge increase in cholesterol, and memory loss that is so obvious to the rest of us and it did not start until she was on the Anastrozole. Nor does she have any snips for late onset Alzheimers. It was so frightening to us, her family, as she felt that if we were to visit that it would kill her due to the extremely high blood pressure which no doctor could get under control. She's the type that, although brilliant, if an MD says here's what you need to take she takes it without question. So we couldn't visit her for 4 years until she was complete with the medication and able to get her cholesterol and blood pressure under control. Unfortunately the memory loss appears to be permanent, and the arthritis which is preventing her from doing so many things she could do prior to the AI's has limited her ability to play banjo and other instruments which is a fundamental joy for her.

    My issue here is whether or not it's 25% or 50% of folks (most don't report to their doctors or pharmacists when they quit the AI's because they don't want to argue about it) that pharma could and should continue to find AI molecules with less deleterious side effects. Why not? It's a 5 to 10 year revenue stream and although you don't see it much in the US because we don't have a truly national health care system here, you do see in the UK blogs huge numbers of women struggling with AI toxicity and side effects and trying desperately to stay on them even though their quality of life is so diminished.

    I'm trying to "make it work" even though I feel poorly and am following every recommended side effect prevention management tool that's been offered by my onco.

    So no one is blocking you, no one is disregarding your very thorough analysis of the exact number of women who left certain clinical trials due to side effects. But I personally do think you are leaning toward everyone taking them even though there are clinical trials for elderly folks that show taking the meds every other day can be effective and less toxicity than taking them every day (as one example).

    I don't think there is a single person here that doesn't want the AI to work for them. Period. Full Stop. This is a place for loving and gentle support. Honesty is also a great asset on these blogs as how else can we find out strategies for helping make these meds work if we are suffering from terrible side effects.


  • KateHanni
    KateHanni Member Posts: 70
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    I'm working very full time writing medical research grants so I can't offer the citation right now, but I recall seeing credible evidence that it takes 72 hours for any one of the three AI's to fully metabolize.

  • beesie.is.out-of-office
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    Kate, thank you for replying. Your comment about 50% of patients dropping out of the AI clinical trials has been made numerous times in multiple threads, often stated in a way that seemed to imply that this drop-out rate applied across the board. If you were referring to one specific study, that's quite different. This is why I repeatedly asked you to provide your source or a link. I am able to look up clinical trial information myself, but if I don't know the study you are referring to and the results I find contradict your statement, then if what you are saying is true, it is helpful for all of us to know your source.

    As someone who, for one diagnosis, opted to not take anti-hormonals and then, on a second diagnosis, decided to take them, I certainly am aware that many patients struggle with side effects. As I said, even for myself, since my side effects appear to be increasing after 2 1/2 years, I don't know what the future holds. I hope I can continue for the full 5 years (or even longer, if recommended by my MO and if the benefit appears to outweigh the risk), but I don't know what the future holds. For some patients these are literally life-saving drugs; the fact that a significant percent of patients find the side effects intolerable is a serious problem. I agree completely that we need medical researchers to be working on better alternatives.

    That said, for those reading who have yet to take their first pill, I believe that talking about individual issues with side effects is very different than reading blanket statements that imply that 50% of patients stop taking these meds because the side effects are so intolerable. For someone making her decision on whether or not to take these meds, I would think that a 25% (or likely lower) drop-out rate, while concerning, is less likely to influence a "no, not even going to try" decision than a 50% drop-out rate.

    Anyway, thank you for the response. I do share your concerns about side effects, but I am also cognizant of how a discussion like this can influence decisions. This is why I believe it's so important to separate personal anecdotes from facts, and provide support for the facts.


  • moth
    moth Member Posts: 3,293
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    cancersux2021, I don't want your comments to get lost.

    You mentioned something about a mastectomy and metastatic recurrence. You need to know that a mastectomy does not prevent metastatic recurrence. It can prevent a local recurrence although even that the risk is not zero as some people have a recurrence since the surgeons cannot remove all of the tissue.

    So having a mastectomy would not mean that you could skip the hormonal therapy

  • KateHanni
    KateHanni Member Posts: 70
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    Apparently we can build back bone density...however the AI's have the side effect of reducing bone density so it takes a dental clearance to get the Prolia injection (which if you have the worst side effect can cause your teeth to fall out) to increase your bone density while on the AI's. Tamoxifen is actually helpful to your bones and increases bone density for many. I may end up on Tamoxifen for that reason as I am apparently osteoporotic.



  • salamandra
    salamandra Member Posts: 736
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    Hi KateHanni,

    I had that experience with tamoxifen. I tried 4 different generics and different doses, and they all were sedating. But now I'm taking a different SERM, toremifene, and I'm normal again.

  • rah2464
    rah2464 Member Posts: 1,192
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    Beesie interesting you are having an increase in side effects 2 1/2 yrs in. I am 3 years in and experiencing the same thing. So much so that I am going to ask for a "vacation" from my MO for a couple of weeks just to try and reset. I am already taking 10 mg Tamoxifen day and night which really helped me on side effects. I am hoping the break helps me push on through.