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"Tamoxifen Road" - Support and Encouragement

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  • Spoonie77
    Spoonie77 Member Posts: 532
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    Ok really, sorry, no more posts after this one tonight, promise. ;)

    Before I head to bed, wanted to suggest two threads to follow as they are often exciting to me to read and tend to give me hope for the future. Perhaps it may help others to?


    Breaking Research News from Breastcancer.org

    Breaking Research News from sources other than breastcancer.org

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    I believe that I am a rapid “metabolizer" with an efficient uptake. Between ultrarapid and normal. I don’t take many drugs, but the drugs I do take work fast and well. I do not have to try a lot of medications to get the desired result. Those are hallmarks of ultrarapid metabolizing, but I don’t believe I have the highest rate

  • edj3
    edj3 Member Posts: 1,579
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    Am curious about that too, Spoonie!

  • celand
    celand Member Posts: 223
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    I began taking Arimidex but had horrible joint and bone pain, among other side effects, so I demanded that my MO switch me to Tamoxifen, which he did but not without a lecture! I did end up switching to a new MO, who informed me that I should have not been on the AI because I was not completely post menopausal. I have been taking Tamoxifen now almost 2 years (I took the AI for about 2-1/2 months). My side effects from Tamoxifen include leg cramps, sometimes severe, weight gain, mild joint pain but not debilitating like the AI, thickening of uterine lining, mild night sweats, occasional indigestion/heartburn, vaginal dryness, dry eyes, occasional headache so far. Also occasional dizziness and some insomnia. I am continuing taking 20 mg per day, taken in the morning. Lately, I have had some pain in my calf and a couple of unexplained bruises which I did show my MO last appointment but she told me that I could have bumped into something without realizing it but if this continues to let her know. Now, since January 1, 2019, I walk everyday at lunchtime, I take yoga 2 to 3 times per week and I swim every Friday (indoor pool so rarely miss this). Within the last month or two I have noticed that when swimming, as I get out of the pool my calves start to cramp and also when I get out of the hot tub. I was wondering if Tamoxifen has anything to do with this. I am continuing to take this because my Mom died of BC in 1976, she did not have this medication to take then, if she did it may have given her more time with her children. Also, if I did not take it and had a recurrence I would have wondered if taking it would have made a difference. So, for now, I am going to take it unless I can not tolerate the side effects.

    One more weird thing that happened, for New Year's Eve, I drank one 8 oz Margarita and a half glass of champagne, wasn't feeling very buzzed when I went to sleep, well the next morning I woke up with extreme dizziness that I could not stand up, it took quite a while before this wore off. I asked my doctor about this and he told me to stay off of alcohol completely, so I have only had a sip or two from my husband's beer once since then and that didn't seem to affect me adversely, but this was very scary.


  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    Celand, I remember you!!! The bruising is a Tamoxifen side effect, unfortunately. If I bump into something hard, I will bruise. I keep Arnica Gel on hand, which will cause the bruise to dissipate. I do get the occasional leg cramp and foot cramps, but eat bananas every day to help prevent that from happening. Potassium, sodium, calcium and magnesium help both bruising and cramping. Hydration is also key to reducing cramping. I have weekly deep tissue massages to increase blood flow and reduce muscle tightness.

    I did not get a lecture when choosing Tamoxifen. I had a hysterectomy and oopherectomy, as opposed to indefinite Lupron injections. I had cycles that were every 3 weeks and it was just too much. I was planning to take an AI, until the early stages of osteopenia were found. My plan is to stay on Tamoxifen as long as possible, and then switch to Evista (as long as I tolerate it.) Both help with reducing breast cancer risk and are bone builders.

  • celand
    celand Member Posts: 223
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    Michelle,

    Thank you for starting this thread! It has been most helpful for me to read about side effects that others are experiencing while taking this medication. I also have osteopenia, so not sure that an AI will be so good for me to take, however I don't want to take Tamoxifen for longer than 5 years as I am really frightened about the possibility of serious side effects, but my surgeon told me that they are rare. I have not had a hysterectomy yet but am being monitored by a gynecologist, she did perform a DNC on me last February to remove a polyp from my uterus, it was benign, thankfully. She is recommending that I get a hysterectomy but she says that I don't have to make that decision right now, so for the time being she will continue with monitor me and if something comes up I will probably go ahead and get it done.

    Now, what is Evista? Does it have as many side effects that Tamoxifen does? May be something that I can take after my 5 yrs. My MO seems to be wanting to put me back on an AI but I just don't know how I will be able to function if I am in constant pain!

  • Spoonie77
    Spoonie77 Member Posts: 532
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    Celand -- Just want to say that I had alcohol issues as well after starting Tamoxifen. You're not alone. I didn't experience dizziness like you mentioned, but I do know that is listed as a possible SE for the drug in general. But as far as the alcohol, I used to be a wine drinker. Could drink a few glasses of wine in an evening, not even be buzzed, just enjoying myself while watching a movie or such. After 2 weeks on Tamoxifen, Game of Thrones started back up. Went to enjoy my standard favorite wine, had a small 4 oz glass and was throwing up within the hour, nauseous for the next 2 days, and felt extremely hungover for about 3. It literally felt like I'd been binge drinking like long ago college days. Ugggh.

    I could no longer tolerate any kind of alcohol, not white or reds, not beer, not hard liquor. The only thing that changed was Tamoxifen. I definitely believe it alters our abilities to process it. While my MO also told me "just don't drink alcohol", I wasn't happy with that. Doing some research reveals that women in Menopause have troubles tolerating alcohol. It makes sense that without hormones acting in our bodies like normal that we wold also experience this. Also, since Tamoxifen is processed through the liver and Tamoxifen can alter liver enzymes in some patients, it's quite possible that that is one of the reasons for the SEs.

    Since stopping the Tamoxifen I haven't had a drink yet, but I'm hoping when I do, that things will be back to enjoyable for me. Wishing you the best of luck. Hopefully it was just a fluke for you. Like others suggested to me, if you issues with one type of drink, try a different one. Some had better luck with a lower alcohol content or a white vs a red.

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    Celand, Raloxifene also known as Evista, has been approved a little over 22 years for the treatment of osteoporosis in post menopausal women. Researchers noticed a decline in breast cancer, in women using Evista. Evista was studied in STAR, which compared it to Tamoxifen. It is known as a preventative, but not treatment. My plan is to complete at least 5 years on Tamoxifen, and reevaluate from there.

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    Celand, I just noticed the statement about alcohol? I don’t drink, so I have not had that happen. My parents, raised in the depression, were strictly non drinkers. Literally, had a horse and buggy in the 1960’s, plus a Chevy. You get the idea... we were Catholic with a twist of Amishness

  • dtad
    dtad Member Posts: 771
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    Michele in Cortland...just curious. Are you a medical professional?

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    Dtad, hmmmm, good question...right now I am a puppy mom...lady of leisure...and other things too!!!

  • celand
    celand Member Posts: 223
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    Spoonie77,

    My doctor only told me to avoid alcohol but offered no other explanation of why this happened. I also didn't read in the pharmacy handout that comes with the prescription where it said to avoid alcohol, although I would think that would have been on the actual bottle that the pills came in. But I did get to thinking after it happened that it might have had something to do with the way that my body metabolized the drug. This really has scared me off of all alcohol (although the couple of sips of beer didn't seem to affect me that way) for as long as I am taking this drug.

  • celand
    celand Member Posts: 223
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    Michelle in cortland, thanks for the explanation and sounds like a good plan.

  • runor
    runor Member Posts: 1,613
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    Mich in Corn - I think that was an honest question by Dtad and I think it deserves an honest, full disclosure answer. In fact, you hint broadly and frequently at some affiliation with the medical or pharmaceutical industry. As such, past, present or future affiliations and associations ought to be stated clearly and plainly in your opening post. To dance around the edges of this issue with a coy response is disingenuous at best and dishonest at worst. If you have made your living, or even volunteered with these industries you are not an impartial poster. You have a very definite agenda. As evidenced by your statement that this is not a debate. Note - yes it is. Everything is. If you want to outlaw descent or opposing views, you need to state, clearly and plainly, why it is you think you get to do that. By what authority do you get to oversee a tamoxifen discussion with you at the helm while the questioning voices of others are silenced with your abundant knowledge?

    To be clear. Do I support your right to make a thread in which you state this is' not a debate' and then go on to answer all questions as if you have the inside track? Yes. I WHOLE HEARTEDLY support your right and freedom to do so. But ONLY when you have said by what authority and credentials, self appointed or otherwise, you think you are in the position to do this. Do it - but make your agenda, your bent, your position and your biases absolutely clear. Everyone reading this thread or choosing to post is entitled to honesty. If you want this to be a thread directed by your own influence on taking tamoxifen, that is perfectly fine. If you lay it all out in black and white at the start. Dtad deserves a full disclosure answer. Her question was prompted by crumbs and tidbits that you yourself offer.

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    Rumor, none of your business. My experiences are why I am here. I have a vast education and am knowledge based.

  • Spoonie77
    Spoonie77 Member Posts: 532
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    I'm sorry, but I do agree with Dtad and her question about whether you are a medical professional or licensed in some manner. I think that's a fair ask given that some of your comments have specifically alluded to that being the case in this thread and others.

  • Spoonie77
    Spoonie77 Member Posts: 532
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    Celand - > You're right, there is no warning about alcohol and Tamoxifen on the bottle or from the MO. I think their statement, your MO and my own, is just their way of brushing aside the change we exprienced. IMO it's easier to say "just don't drink alcohol then" rather than explain what my PCP did to me, that there really isn't a ton of info on why when we hit menopause many women experience changes in their ability to consume the occasional drink. I'm glad to hear that a few sips of beer don't cause you an issue. At least you can still cheers once in awhile! :)

  • salamandra
    salamandra Member Posts: 745
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    I was wondering about that too. And why you felt you could sure you could definitively tell me what drug brand to try - based on what. The research I have seen supports trying different brands for different effects, but nothing that would point to a specific superior one.

    I guess now I'm also wondering what you envisioned about this thread that would be different from or complementary to the "Bottle O'Tamoxifen" thread.

    Of course it is up to you what you feel comfortable discussing. But most of us here come to share in an open and honest way, including details about our experiences and medical care.

  • Spoonie77
    Spoonie77 Member Posts: 532
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    Oh and Celand - I forgot to post this earlier, silly brain of mine! But here is some info on Evista that may be helpful to you.


    Evista per BreastCancerOrg

    image

    Tamoxifen & Raloxiefene (Evista) For Lowering Breast Cancer Risk

    "Both of these drugs are selective estrogen receptor modulators (SERMs). This means that they act against (or block) estrogen (a female hormone) in some tissues of the body, but act like estrogen in others. Estrogen can fuel the growth of breast cancer cells. Both of these drugs block estrogen in breast cells, which is why they can be useful in lowering breast cancer risk.

    These drugs are used more often for other things.

    • Tamoxifen is used mainly to treat hormone receptor-positive breast cancer (breast cancer with cells that have estrogen and/or progesterone receptors on them).
    • Raloxifene is used mostly to prevent and treat osteoporosis (very weak bones) in post-menopausal women."


    American Society of Clinical Oncology Clinical Practice Guideline Update on the Use of Pharmacologic Interventions


    https://ascopubs.org/doi/full/10.1200/jop.0948502

    "Raloxifene is not recommended for breast cancer risk reduction in premenopausal women. Raloxifene does not have demonstrated activity against established breast cancer and should not be used to treat breast cancer or prevent its recurrence."


    --- Like Michelle states, Evista is not a treatment for those who have had Breast Cancer, it's a preventative with the benefit of helping to prevent Osteoporosis if I understand things correctly. Hope some of this info is helpful for when you meet with your MO next to formulate a continuing plan of treatment for you.

    I totally understand the concern about wanting to be able to stay on a med to prevent recurrence but also have quality of life. It's definitely a personal choice and takes some weighing of the odds. For me, my risk of METs according to my MO w/o hormonal treatment is 28-35%. I plan to give things a chance at each option, but if my quality of life is toast on a specific option, then I am willing to say I tried and let the chips fall where they may. Who knows, I might be one of the women that never sees cancer again. Fingers crossed.

    Keep us posted Celand.

  • micmel
    micmel Member Posts: 9,975
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    If What you’re saying is none of our business? Then why on earth would anyone want to post here? If this is a supportive thread for each other. Why does it seem anyone who points out anything intelligent other than you, seems to be dismissed or swatted at in a way. ?
    It seems to me that is a very logical question to be asking of someone who seems to offer a lot of medical references and topics, related to side effects and sure fire reasons that our bruises happen. Bruises happen because people bang into things daily. All chemos that harm healthy cells are more at risk for bruising, cell counts you can also thank for that. I am not on tamoxifen. But I bruise like crazy. So if youre suggesting for me to try a product while not knowing any of my allergies or issues, how do you know I should be even using that product? I just agree with dtdad and Runor. (Not Rumor) If you’re going to put it out there. It’s a logical question to be asked. The fact that you dodged the question immediately makes me realize this thread isn’t for me. (Not that I felt welcome anyway) I am certainly
    Not intending this to be anything other than pointing out a neutral view. You gotta give and take. Seeing both sides of Of everything makes you less blind. Seeing only one side, assures you can only see limited views!
  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    I wanted a fresh thread for the current users. I have always stated that I am an establishment and protocol person. I work with my MO for the best results and encourage others to have a dialogue with their MO. There is way too much doctor and pharmacy bashing on here, and it gets old. Name calling and bullying is a waste of time, when health and well being is at stake

  • pupmom
    pupmom Member Posts: 1,032
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    Michelle, I agree. I know your intentions are the best, but with all this abuse why bother?

  • scrafgal
    scrafgal Member Posts: 412
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    I sensed that it would take less than one week before this thread resurrected issues raised over a year ago on the other thread...it's really just a shame...I come bc org, in general, for support and shared experiences not actual medical advice. I take all advisory comments as opinion only and, I discuss medical issues with medical providers that are known to me. That is probably true for most people here.

  • Spoonie77
    Spoonie77 Member Posts: 532
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    See Michelle, that's why I am confused, what does it mean that you are an "establishment and protocol person"?

    I have no idea. Truly.

    And where have we seen Pharmacy or Doctor bashing on this thread? Did I miss something? Or anywhere else on the boards? Granted I haven't been here for years, but some amount of months now and for me I've not seen it, not even on Bottle O Tamoxifen thread.

    And who is calling anyone names? I guess I missed that too.

    As to bullying, in my experience on this thread, I have felt bullied by you. Unwelcome because of you. Simply because I have differing experience and wanted to share information, links, research studies to offer a wider perspective for each person to have extra tools in their toolbox if they wished. I have in no way tried to discourage anyone from following their MOs advice or treatment plan, but rather said this is the information, this was MY experience, and if Tamoxifen works for you AWESOME.

    I'm sure this was not your intent but it was what happened to me, and according to others who have shared here, to them as well.

    Perhaps there is some reevaluating to be done. IDK.

    No matter what, I commend you for having an open dialogue with your MO. I think every patient and dr should be able to have one as such and I think you do a great job of putting that thought and goal forward in your posts.

    It just comes down to what Micmel stated "Seeing both sides of Of everything makes you less blind. Seeing only one side, assures you can only see limited views.", meaning those, like myself or Dtad or Runor or anyone else I am missing, who have had negative experiences end up NOT feeling welcome here because a member is trying to keep a thread entirely positive, when that's just not how Tamoxifen works in the world of cancer. There is good and bad. And just because I had a bad experience DOES NOT mean I am NOT encouraging others or supporting them in their choice to take Tamoxifen, quite the opposite in fact.

    The truth is that most people handle Tamoxifen just fine, however it is also true that many people also have SEs to varying degrees, some livable and others to the range of debilitating. Either experience is still helpful and supportive to others. With both sides of an issue presented each person can make informed choices that are best for them. I think that is the wonderful goal of BCO and its amazing community memembers - we support each other, share experiences, and grow from hearing them.

    Anyway, that's my 2 cents. Wishing you all a good evening and I'll see ya around on the boards. :)

  • Spoonie77
    Spoonie77 Member Posts: 532
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    What abuse, Pupmom? Who is abusing who?

  • edj3
    edj3 Member Posts: 1,579
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    I am relatively new to these boards, so perhaps that will disqualify my experience with this specific thread in the eyes of some.

    Best I can tell, getting breast cancer (or the melanoma that preceded it) did not impact my brain or my reasoning abilities and right now my BS detector is screaming. I, too, would like to know the answers to the questions dtad, runor, Spoonie77, Salamandra, and Micmel have asked.

    Your agenda is your own and right now, in the absence of your declared agenda I do wonder why you're so invested in strangers taking tamoxifen. Do you work or did you work for Big Pharma? If so, just say that.

    You've alluded to your qualifications and now we've asked what those are. Why play coy? When someone like Beesie is asked about hers, she's very quick to say she's a well read layperson, no medical education.

    It would be good if you were that transparent.

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    I am invested in all breast cancer patients living to an old age. We have a stage IV person that came to these boards for help, and one or two people were supportive of her seeking established therapies. Three years, stage I to IV. Those who tried to assist know who they are and are reading this and not commenting. So, if someone wanders onto a thread that I started, and talks with their MO BS or RO, and takes advice regarding curative therapies, then I will be ecstatic. Tamoxifen, is a drug that I take and am successful at taking, God willing. I won’t be trying AIs because of osteopenia. So, yeah, I am sure vested in healthy outcomes for all patients.

  • elainetherese
    elainetherese Member Posts: 1,632
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    FYI to newbies: there are many many threads on BCO in which breast cancer patients discuss refusing (or quitting) hormonal therapy. Some on this thread (e.g., dtad) are hormonal therapy skeptics who are supportive of those who choose not to take hormonal therapy. This thread was supposed to be supportive of those who were willing to give Tamoxifen a go. In that sense, it was for those who were doing their best to follow their oncologists' advice.

    By the way, I am not a medical professional and do not take Tamoxifen. (I'm doing ovulation suppression and Aromasin)

  • runor
    runor Member Posts: 1,613
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    No one here has been abused.

    However, honesty and full disclosure have been requested. That is not abuse. That is accountability. MIC hints, points, suggests and dances around the edges that she is somehow involved in the industry. As such, should she even be posting here? If she does choose to post here then she needs to do so with full disclosure. Otherwise, her posts are highly suspicious and should be read as such. In fact, if she has a vested interest with the pharmaceutical industry, her posts might rank as prejudicial and should have a disclaimer saying as much. She needs to be way more clear, plain and transparent.

    I think it would be perfectly acceptable for her to preface all her responses with "I used to work for pharma and this is how I see the world of tamoxifen..." Fair enough! Then we all know what page everyone is on. There is another poster on BCORG who does great gobs of research and makes extremely intelligent and on-point posts and has NEVER claimed, hinted or suggested that she is anything other than an average citizen who reads a lot. A LOT. That is not the case here.

    MIC, you may have an industry insider perspective to offer and for all I know that might be a valuable thing for members to have. But only if we know that's what it is. There is a tone of extreme condescension here that your peers are objecting to. Rightly so. Don't just dangle over our heads that you know something we don't. Spit it out. Tell us where you are coming from. And no, 'establishment and protocol' does not cut it. If you have an angle you wish to promote - promote it! But at least let us know it's an angle and how you got there!

  • Spoonie77
    Spoonie77 Member Posts: 532
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    "I am invested in all breast cancer patients living to an old age. We have a stage IV person that came to these boards for help, and one or two people were supportive of her seeking established therapies. Three years, stage I to IV. Those who tried to assist know who they are and are reading this and not commenting. So, if someone wanders onto a thread that I started, and talks with their MO BS or RO, and takes advice regarding curative therapies, then I will be ecstatic. Tamoxifen, is a drug that I take and am successful at taking, God willing. I won't be trying AIs because of osteopenia. So, yeah, I am sure vested in healthy outcomes for all patients." - Michelle

    ------

    No one, that I see, is debating any of this Michelle. Not one bit. I think we could agree that WE ALL want people to survive for hundreds of years on whatever treatment works for them, Tamoxifen or otherwise. I wish you all the luck in the world on your threapy and to every one else on this board.

    I don't think I've seen anyone on this thread STATE to anyone else that a person SHOULD NOT take established therapies. If I'm wrong, please let me know.

    I think all of us have been stating...."this was my experience", "this worked for me", "this didn't work for me", "here is what I learned, maybe this might be of interest to you?"....these are all great things.

    I just wish you would be transparent like others on the boards have and continue to be. Then everything is in the open and people can make informed decisions on statements made that, at least to me, come across with an air of "I'm a doctor and I know" or the like. That's how it reads to me, whether you intend that or not...it's how it is.