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Rejecting hormone therapy

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  • salamandra
    salamandra Member Posts: 736
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    I totally support the wish for better drugs with fewer side effects, with more personalized prescribing technology (like oncotype).

    I totally support any woman who makes an informed decision for herself that the side effects of the drug are not worth the potential benefit. I support that whether she is making the decision after having tried every possible variation of hormonal treatment and experienced bad side effects, or whether she has tried none of them and is making a decision based on risks alone.

    I personally came very close to rejecting hormonal treatment after only trying solid tamoxifen, and I lay some of the blame for that on the way it was presented/handled by my doctor - so I also will not blindly defend the medical establishment's role here. (Details are spread across the boards so I won't go into the whole story again, but the short version is that I found a way forward with her that I am really happy with).

    There is absolutely room for improvement in how oncologists support women in this process, starting with acknowledgement that hormone therapy can be as impactful on quality of life as chemotherapy, if not more so. I was incredibly glad when I saw a study shared here I think last year that addressed that question, and I hope there will be more studies and more education for physicians.

    But I have a big problem with mischaracterizing science, mischaracterizing statistics, confusing evidence with anecdotes, and anything that makes it more difficult for a person to get to that place of a well informed decision.

    When a woman comes to these boards and asks for input, I will give my input that I think it's probably worth trying these drugs for any woman who anticipates/strongly desires more than 5-10 years more of life, that plenty of women do find a variation of these drugs that are either basically side-effect-free or very tolerable, and that in most cases it will be worth an experimentation process to look for one that works for her.

    FWIW, this thread is "rejecting hormone therapy', which I understood to extend both to AIs and to SERMs, and SERMs most definitely are not estrogen deprivation therapy. Some levels/types of estrogen actually increase. The term hormone therapy or endocrine therapy is meant to encompass both of these primary modes. If you want to call it treatment instead of therapy, it seems semantic to me and I wonder if you are consistent and call it chemotreatment instead of chemotherapy, but it doesn't really matter. Referring to it broadly as estrogen deprivation though is a misguiding mischaracterization that contributes to misinformation and seems like part of the problem rather than the solution.

  • BCat40
    BCat40 Member Posts: 121
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    While AIs are most definitely causingestrogen deprivation, I still consider it legitimate to call SERMs a form of estrogen deprivation. Several of my doctors have colloquially referred to SERMs as estrogen blockers. They are blocking estrogen from acting in many of the cells in your body as it normally would. Thus, they are depriving those cells of the benefits of estrogen. In certain cells, such as uterine cells, SERMs may have a pro-estrogen effect, but in the cells where the SERMs are blocking the estrogen, those body systems are being deprived of estrogen. Thus, on the two SERMs I tried, my muscles and joints were being deprived of estrogen causing me traveling muscle cramps all over my body, neck pain and arthritis like pain that made me feel like I was 90 years old instead of 40.

  • BCat40
    BCat40 Member Posts: 121
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    Also, I am not sure why I am being castigated for sharing my feelings about hormone “therapy.” This topic fits well within this forum and this threadand I am a BC patient with a perspective as is everyone else here. If I started a thread specifically titled “upset with hormone blocking treatment options” or “venting about hormone blocking” would that be ok? Or is it only ok to be a cheerleader for other women to use the drugs?

    I continue to believe that if women don’t vocally demand better we will never get better options.

  • Esther01
    Esther01 Member Posts: 229
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    BC at 40,

    You are a treasure and your perspective is valuable. Keep speaking and posting. I appreciate hearing all of it.

    Love,

    Esther

  • threetree
    threetree Member Posts: 1,366
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    BCat40 - Once again, I agree that we will never get better treatments if we aren't vocal and don't push "the industry" to hear our concerns and look for solutions other than estrogen deprivation. There's got to be a better way! When I go to the onc's office they always ask, "How are you today?" and expect the routine "I'm fine, how are you", but I always say, "Well I have cancer and I don't like coming here." Most of them bristle a bit when I say that, but I don't say it to be a pain, but to keep reminding everyone in the medical arena that this is no picnic and we need a better way. If everything is always "Just fine, how are you?" it looks as if we are all relatively satisfied. I think it is important to keep sending the reminders to medical and pharma people just how difficult all of this is.

  • KateHanni
    KateHanni Member Posts: 70
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    That's strange as I know I put it in originally! Let me see if I can find that and ensure it's showing up!

  • KateHanni
    KateHanni Member Posts: 70
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    Funny you should say that about how they ask you how you are and you are honest! When I go to my oncologist office, everyone in the waiting room looks dead, lifeless, no emotion or life about them. It's extremely disconcerting. I know they have cancer and many have terminal mets that have much worse known outcomes than I have; but I can't help but wonder if the treatments they are receiving are robbing them of quality of life. As much as my family wants me to live a long life, my youngest son who has always been afraid of losing me too soon (I was 35 when I had him) he said "mom I'd prefer you have 5 years of quality of life than 20 miserable years trying to survive cancer with these medications. That was helpful...I haven't stopped but I am taking my AI's every other day as opposed to every day simply because I could not tolerate them otherwise. Literally every common side effect and some of the serious side effects I had with anastrozole and exemestane generic and now I'm on Aromasin Brand (1135 per month USD) and am able to barely tolerate every other day. Yesterday was my day on the med and I nearly had a full blown depressive event at the dentist office where he was showing me bone loss in my jaw and telling me he could not approve the prolia injection or clear me because I've already lost too much bone in my jaw.

    I have to ask y'all why is it we post menopausal women are not offered oophorectomy as opposed to the aromatase inhibitors? Endometrial cancer also runs in my family and Tamoxifen can cause EC so why not just take it all out as a preventative and eliminate the estrogen created by the ovaries? Anyone know why?

  • KateHanni
    KateHanni Member Posts: 70
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    Yeah your posts are totally appropriate and wonderfully honest. I deeply appreciate that. I'm not someone who likes to complain and quite frankly I'm not a sickly person either so when I found out I had breast cancer I was in shock and also angry. I breast fed both of my kids a long time, have been on a keto diet for 28 years (no sugar), never exposed to estrogen either for birth control or menopause, was very athletic as a young person and still very fit and so to find out I had breast cancer indeed was shocking and anger inducing. It was kind of like "why did I try so hard to be healthy, only to get cancer anyway." Wow is me kind of pity party.

    All that said, it's a journey and we all process this stuff differently. I have PTSD from a violent sexual assault I suffered in 2006 and so the cancer diagnosis triggered my fear of mortality and it's been very hard for me to find a centered place inside. Also, for the person who castigated you, the Aromatase Inhibitors (this according to multiple physicians and endocrinologists I've spoken too) cause brain fog and memory loss just like chemo does, but without some of the harsh side effects of chemo. So I think this needs to be a safe space for us all and that we need to care for each other here and realize that we are all going through this process, but it's uniquely personal how we get through it and the vulnerability we feel should be taken seriously!

    I work for a healthcare non profit and support and kindness and understanding are key components of our support systems. That's what BreastCancer.org has created the platform to offer, we need to honor that!

  • KateHanni
    KateHanni Member Posts: 70
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    OK I'm kind of in shock based on the predict tool you sent me, when radiation is included (which I did have) the difference in my risk level with or without the aromatase inhibitors is only 2%. If I take the AI's my risk is 6.4% over 20 years, if I don't take the AI's my risk of recurrence is 8.6% over 20 years.

    Now I know this is going to sound cynical, but why on earth would my doctors not give me the full scope of the picture given all of the side effects I've had with the AI's? And believe me I wanted them to work for me as prescribed. My mother took anastrozole and she had no "known" side effects (although she cannot remember anything, her cholesterol and BP spiked for the 5 years she was on anastrozole). I had every side effect, hidden and/or obvious. I think Dr's should be far more straight forward with us about our risk so we can make a fully informed decision about our treatment options post surgery and radiation.

  • KateHanni
    KateHanni Member Posts: 70
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    Jasmine,

    Did you have to try all three AI's due to side effects?



  • KateHanni
    KateHanni Member Posts: 70
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    I'm right here with you sister! I totally get it. I do think we all understand the risks and that's why we are here trying to find solutions and communicate our feelings and experiences so we can make informed choices. Where I get very upset, is that the UK predict tool does not include radiation. Radiation is known, well known to significantly reduce the risk of recurrence. So by excluding that from a widely used predict tool is pretty bizarre and then I am taken to one that does have all of the options that relate to my situation and I just found out that taking AI's only decreases my risk by 2%. And in exchange for that 2% of lowered risk I have bone loss, loose teeth, headaches, sleeplessness, bone and joint pain, depression, anxiety, weight gain, huge increase in blood pressure, higher cholesterol, do I need to say more??? Quality of Life, for me, is where I'm leaning at this point. As much as I love being alive, I would love to enjoy what's left of whatever life I have to live. I'm 61. If I could eek out 10 years of good life, feeling good that is; I'd settle for that and I think that's extremely realistic. I know it's me taking the risk here. I knew when I began taking the AI's every other day that I was risking and if I stop altogether I'm risking but it's MY risk and I would never encourage anyone else to take that risk with me. It's a personal choice.


    If you haven't seen this tool, here it is! https://www.tuftsmedicalcenter.org/ibtr/ It's a credible tool to determine risk of recurrence!

  • KateHanni
    KateHanni Member Posts: 70
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    I think it's unethical for MD's to NOT acknowledge that some people, especially those who are elderly, get toxicity from the "normal" dose of AI's and in clinical trials they have shown that every other day worked for those who were elderly and suffering from toxicity of AI's with the once per day regimen.

    I really wish the AI's were working for me. I am devastated that I'm having such a hard time with them. It's heart breaking, but I'm going to need to decide here pretty soon if I'm to continue or not and I think it's going to be not.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,846
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    KateHanni,

    Estrogen, though produced primarily by the ovaries, is produced by other parts of the body as well. Removing the ovaries cuts out the major production site but doesn’t eliminate estrogen production from other body parts.

    You are responding to many posts without identifying who you are responding to. Our answers simply get added after the last post to the thread. They don’t follow the post you are answering. It will make it easier to follow if you name the person you’re responding to as you did with jasmine. Take care


  • beesie.is.out-of-office
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    Kate, you posted 7 times in a row but without specifying who you are responding to... did you respond to my post asking for more information about the BIG 1-98 study? You'd posted that 50% of participants dropped out because of side effects, but I can't find that information anywhere. If you have a link to support that statement, it's important to provide it. While decisions on hormone therapy and experiences with hormone therapy are unique to each of us, research study findings are factual. I'd really like to understand the facts.

    "Where I get very upset, is that the UK predict tool does not include radiation. Radiation is known, well known to significantly reduce the risk of recurrence. So by excluding that from a widely used predict tool is pretty bizarre"

    It's not bizarre at all. Did you read my September 3rd post that explains why it's actually not a problem at all that radiation isn't included in PREDICT?

    I looked at the link to the Tufts Medical model that you used, the one that includes radiation. The Tufts model is only estimating ipsilateral recurrence risk, i.e. in-breast localized recurrence. This is completely different than the PREDICT and LifeMath tools, which only estimate distant recurrence. Hormone therapy reduces the risk of both a localized and a distant recurrence. Local recurrences, while undesirable, are usually fully treatable, therefore the greater concern and the most compelling reason to take hormone therapy is to reduce the risk of a distant/metastatic recurrence, which ultimately will be terminal. For this reason, it's always important to look at localized and distant recurrence risk risk separately and not combine them or confuse one for the other.


    Salamandra, great post. I'll be honest here. I think that many MOs over-prescribe endocrine therapy. If someone has an ER+ breast cancer, it's a rote reaction; endocrine therapy is almost always prescribed. Most often it is appropriate and it makes sense for the patient to at least try these meds to see how they tolerate them. But sometimes the benefit vs. risk equation doesn't favor taking the meds. For example, I've seen MOs push endocrine therapy to older patients who have other significant health concerns which could be worsened by these meds, even though the patient's metastatic risk is very low. We have to remember that a 35% risk reduction is a whole lot difference if your starting risk is 20% than if your starting risk is 5%. So when a woman comes to this board and asks for input, my advice is that she get as clear an understanding as possible about her risk of metastatic recurrence, and from that, the amount of risk reduction benefit she will get from hormone therapy. Then she has the information she needs to make an educated decision. But to your point, I too "have a big problem with mischaracterizing science, mischaracterizing statistics, confusing evidence with anecdotes, and anything that makes it more difficult for a person to get to that place of a well informed decision."

  • racheldog
    racheldog Member Posts: 209
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    Kate: Thanks for posting the Tufts version/calculator focusing on the additional radiation therapy input. Is this is mainly for ipsilateral prediction? Hard to understand how any tumor in one breast that has been radiated to prevent local recurrance in that breast can help to predict recurrance in the contralateral breast?

  • dtad
    dtad Member Posts: 771
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    KateHanni...I refused aromatase inhibitors from the start. We all have to make our own decisions and mine was to try to lower my estrogen levels naturally. I exercise daily and lost 30 pounds since my diagnosis. Both of which has been shown to lower estrogen by 40-50 percent. I also take Breast Defend. Good luck to all navigating this difficult disease.

  • threetree
    threetree Member Posts: 1,366
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    dtad - What I wonder is if someone lost 30 pounds like you (I did) and they exercise like you (I walk about 40 min a day), and then they do take an AI (I do), could that AI be literally "too much" for them, given the other factors. If losing weight and exercising cuts your estrogen by 40-50% that is on top of what something like letrozole would do. I think they push these AI's, as a one size fits all , for most everyone with ER+ when for some there may be other, better, and/or equivalent alternatives. Some foods/diets also lower estrogen levels, so that too is a factor in addition to weight and exercise. That said, all of these things still focus on lowering estrogen levels exclusively, and not other methods of treating/preventing recurrences that might not wreak so much havoc on a person's system. I've seen where many on here said their doctors told them if they did truly take that daily walk and maintain a normal weight they would get as much benefit as they would with an AI. I don't know where they get that info, but apparently there are doctors who believe that.

  • threetree
    threetree Member Posts: 1,366
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    Re diet and exercise and estrogen reduhttps://foodforbreastcancer.com/articles/foods-tha...ction:

    Not only do I take the daily walk and have lost 30-40 pounds, but I also eat many of the foods on this list daily. (She backs these recommendations up with studies.) Could doing all of that, plus taking an AI be too much for some of us?

  • KateHanni
    KateHanni Member Posts: 70
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    exbrnxgr,

    I don't know your real name so I'm doing my best to identify you by your chosen moniker.

    I think since I'm not understanding this forum (that replys to someone's post are not paginated in order of who I'm replying too) and that I'm being heavily criticized for this; I'm done. I wish you all the very best in your cancer journey.

    I'm struggling with memory issues, foggy brain and so many issues related to the AI's that clearly I'm not up to snuff to even be in this chat or trying to get questions answered or communicate with others that may be in the same situation. That's a shame, as I spent 6 years of my life fighting nationally for a law to protect airline passengers and I would have done anything to help others and still would.


    Kate

  • threetree
    threetree Member Posts: 1,366
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    KateHanni - I really sympathize, as I have had days (not all days) of so much brain fog, memory trouble and more (couldn't organize thoughts into cohesive form, etc.) that I too have felt that I could not participate at times. One thing I don't think is covered enough on these boards are the mental/cognitive effects of these AI's on our brains. They are serious and debilitating, and like you suggest could even be keeping some from participating. Please give it some thought and participate when you think you can. I've appreciated your posts.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,846
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    katehanni,

    Exbrnxgrl is my user name and like most here, and on other message boards, very few of us use our real names. So addressing us by our username is not only fine, but expected! Yes, it can be a bit confusing when responding as our threads don't have any way to show that your response is addressing a particular member unless you address them by their ( user) name. Since online forums are all formatted a bit differently, it does take time for newer members to master the navigation. No big deal and certainly not a criticism!

    I am sorry that you experienced such difficult se's on AI's. I think the main point that many of us are trying to make is that no one knows how any drug, Tamoxifen or AI's will effect them. My history with the AI's hasn't been bad but I had no way to know that when I started. The best side effect? I am stage IV and have no progression for 10 years.

    I fully understand that these drugs are not for everyone and they come with no guarantee regarding future progression. I have wished on a thousand stars that we had drugs that didn't have the side effects of the anti-hormonals, but at present, we don't. Yes, everyone should be informed about any drugs they take both good and bad, but bear in mind that not every se will happen to everyone.

  • KateHanni
    KateHanni Member Posts: 70
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    Exbrnxgrl,

    Did I mention the tooth loss? I mean this last week was just horrifying. I was feeling fine taking my every other day dose of the Aromasin and then I visited my Onco and he said I have osteoporosis and needed a dental clearance before he could give me a Lupron shot to help with the AI caused bone loss and my current osteoporosis in my spine. I got in to a dentist and he said that I already had bone loss around a 2 year old implant and he cannot permit the shot or clear me for the shot. Also he asked me this: Did your oncologist tell you about the AI's reducing saliva in your mouth which causes cavities? He said I had a remarkable number of cavities. One year ago I had none, and no my Oncologist who is highly regarded did not tell me about that side effect, or the hundreds of blisters I got from UV exposure which is not a listed side effect here (but is a listed side effect in the UK).

    I'm just miserable, depressed, and don't know the right path. I'm probably going to go off the AI's and seek out any alternative life extending treatments that don't make me want to take my own life or cause my body to break down at such a pace. If I have 5 great years of life that would be better than 20 miserable years. Granted, my cancer was caught very early and was very "treatable" if I could take the AI's. I'm very upset that the pharmaceutical industry hasn't tried to create better molecules that have less side effects. With 50% of folks leaving the early clinical trials of exemestane and anastrozole I would have assumed, like they do with other drugs, that they'd keep working to find better solutions to those issues as it's a revenue generating machine for them if you must take them for 5 or 10 years....but I guessed wrong!

    Thank you for your response,


    kate


  • racheldog
    racheldog Member Posts: 209
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    Kate have you really only been on the AI since 5/30? Tremendous amount of issues and yes, the bone loss is terrifying. What was your baseline DEXA scan before you started the AI's?

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
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    Just to avoid confusion, thought I should mention that I suspect you meant Zometa or related drug for osteoporosis. (Lupron is used for ovarian suppression in premenopausal women.)

    Regarding reduced saliva and cavities, my nurse recommended Biotene moisturizing mouth rinse.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,846
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    katehanni,

    I am so very sorry that you have experienced such extreme se’s in such a short period of time. Although awful for you, this is not typical given the short period of time you’ve taken the drug. The bone loss is a bit surprising as it is generally a long term issue but anything is possible. That doesn’t make it any easier for you and for that reason I certainly understand your feelings.

    All of the AI’s and tamoxifen are now generic and inexpensive as well as being made by various drug makers so the original makers are probably no longer viewing these drugs as cash cows. As to work on finding better solutions? That is always in the works! There have been quite a few new and better bc treatments in the 10 years since my dx. Not anti-hormonals but my point is that better tx is always being worked on but the process is not fast and breast cancer is far from simple.

    If your QOL has been severely impacted, you do need to find alternatives or ways to cope, no question there. I think what most of us are simply trying to say is that if ones mo is recommending these drugs you have no idea how you will react. Because I had few se’s doesn’t mean others will and vice a versa. Anecdotes don’t equal data, so I think it behooves those who are considering it to try for themselves.

    I have had a very different though not perfect experience on AI’s. I also believe that they have kept me from progressing even at stage IV but the reality is no one knows. So my only advice is to others is to give it a try but if you are miserable then you can stop. In the end we all must do whatever is best for ourselves but I urge folks not to make decisions based on anecdotes. Take care of yourself.

  • KateHanni
    KateHanni Member Posts: 70
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    Rachel,

    I had never had a bone dexascan prior to the one I just had. So my number for spine was - 3.5 and my hips were pre-osteoporotic at -2.5. Honestly I found it hard to believe and wanted a second scan to double check. My husband is 69 and I'm 61 and we both do figure roller skating and I've always been very active and with notably big bones. I realize big does not mean dense but no broken bones ever!

    Yes for such a short period of time I've had a really bad experience on the AI's but I keep trying to make them work!

  • muska
    muska Member Posts: 224
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    Kate, since this was your very first DEXA scan you don’t have a baseline to compare to and it’s unlikely your bone loss happened over such a short period of time. Usually, a DEXA scan is done before starting am AI and repeated every other year while one is on AI.

    You can talk to your MO about Prolia that is now approved by most insurances for women on AI with bone loss. I was prescribed Prolia when after two years, my very light osteopenia got a bit worse. Prolia not only reversed this trend, it improved my bone density to normal.

  • jhl
    jhl Member Posts: 174
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    Hi Kate,

    I agree with Muska the AI probably did not cause your bone loss, which is a slow process. Although you have a lovely hobby, it is not really exercise that will strengthen your bones. The best exercises are those that are 'impact' ones, like walking running, jumping or things like playing tennis or dancing. Bones maintain their strength with weight bearing exercises that force them to work against gravity. Resistance exercises like lifting weights will also increase bone density.

    https://www.bones.nih.gov/health-info/bone/bone-he...

    Try adding in some hiking or just walking around the neighborhood to your roller skating. Consistent weight bearing exercises can reverse the process.

    Stay well,

    Jane

  • threetree
    threetree Member Posts: 1,366
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    Hello Kate,

    When I got my first Dexa in January 2020 before starting Letrozole, I was downright shocked to see that I had osteoporosis in my spine and osteopenia in my hip. The oncologist told me that it is menopause that usually really does the big number on your bone density, so yours, like mine, has probably been low for quite awhile, but you just didn't know it (I'm 68). I'm not a super exerciser, but I did start walking in the neighborhood for 30-40 minutes about 5 days per week, I take the stairs now, instead of the elevator (especially downstairs), and I've also added 6 prunes a day, along with 2-5 tablespoons of first cold pressed, extra virgin olive oil to my daily food (work it in somehow each day), and after a year, my scan was essentially the same as the first one, so no detectable further loss. Prunes and first cold pressed extra virgin olive oil are supposed to have a positive effect on bone density, and Ruthbru who posts on here said she got through all of her years of an AI with no change in her bone density, and she gives the credit to that serving of prunes every day. I am very reluctant to go with the bisphosphonates, so am trying other things first. It will be awhile before my next scan, and I am just hoping to hold things at baseline, if not improve. I just don't want anything worse. In July of 2020 I did fall on one of my walks (couldn't believe it and was so embarrassed!), but nothing broke, and I'd gone down completely flat onto hard cement, so maybe those prunes had gone to work even just by 6 months.

  • ratherbesailing
    ratherbesailing Member Posts: 118
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    Kate -

    What you're going through is so difficult! And clearly what your dentist told you is upsetting.

    But I have to agree with the posts above abut bone loss. From one article in the journal Oncology referring to bone loss in non-breast cancer menopausal women compared to those on AIs:

    The rate of bone loss is estimated at 2% annually during the first years after the onset of menopause, leveling out to ~1% during the next decade and thereafter.[] In contrast, compared with untreated postmenopausal women, patients with breast cancer who receive AIs experience a rate of bone loss estimated at 2.6% per year.

    So, yes, AI's do increase bone loss. But the chances of the AI causing extreme bone loss and cavities in just a few months seem pretty slim. As others have said, you may have had something going on before you started the AI.

    Of course, seeing different medical providers and getting conflicting messages doesn't help. By all means, go back to your oncologist and ask for clarification. And Exbrnxgrl gives great advice about trying alternatives.

    Good luck!