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How about women over 70



  • boysmom19
    boysmom19 Member Posts: 11

    mavericks mom, I just saw your reply from Saturday. I was busy taking care of my 8 month old grandson Saturday and Sunday which makes me incredibly happy and content.

    I totally agree that the decision about taking an AI is the most difficult thing about having breast cancer. You are correct that there is no right answer and we each have to make the best decision for ourselves. The early treatments - surgery and radiation - were a given and even though I researched them I knew I was going to do both. And honestly, once those were behind me I really did not think about being "sick" nor did I worry. I felt normal and healthy which is what I want to continue feeling like. If I wasn't stressing over this decision I would give little thought to having BC.

    Your point that a medication can be added or deleted is well taken. Although I worry about side effects, I will probably give the medication a try but stop if it seriously impacts my QOL. I am talking to my primary care doctor more about it later this week. She knows me much better than my oncologist and she also seems to see the bigger QOL issues.

    I really appreciate you taking the time to help me keep me grounded and on track!

    I hope you are feeling stronger and regaining your energy post-surgery.

    P.S. I never miss a mammogram but found my lump myself 8 months after my last mammogram.

  • boysmom19
    boysmom19 Member Posts: 11

    I am just getting familiar with this site and not really sure where to post questions. I thought I posted this earlier on the Aromatase Inhibitors thread but now don't see it. So I'm trying again here.

    I'm wondering if anyone has used natural supplements designed for menopause to counter some of the AI side effects. A friend recommended Femigen and my oncologist's office said it was okay to take. However, in researching I see that there are a few other recommended supplements - Menoquil and Membrasin.

    I really had no issues going through regular menopause so never took hormones or anything else. I thought maybe I could head of some side effects with one of these. Has anyone tried?

  • mavericksmom
    mavericksmom Member Posts: 996

    Just when I thought I had everything figured out as far as taking an Aromatase Inhibitor is concerned, I may need to re-evaluate the whole issue! Ugh! I received my full pathology report from my recent mastectomy and there were three types of breast cancer listed. While there still seems to be an extremely low chance of metastasis from that breast, both nodes were neg and the invasive cancer was tiny, I wonder if these cancers were metastatic or just developed on their own?

    I see my breast surgeon today for my first post op visit with him, (I saw my plastic surgeon last week), so I am waiting to hear what he has to say about all of this. He had recommended I see a medical oncologist after my first visit with him, but that was before I had my mammogram that showed suspicious activity. I saw the MO who I trust but at the time of the appointment, I knew I might have cancer again, and while the visit was beneficial, the MO suggested I wait until I knew what I was up against before making decisions. He suggested we re-visit the issue when I had the needed information. At the very least, I think I may need to make another appointment with the MO and go from there.

    The only thing I know for sure is that when it comes to AIs, nothing is etched in stone! All we can ever do is take all the information we have and apply it to what we know about our health at the time.

  • boysmom19
    boysmom19 Member Posts: 11

    mavericksmom - Good morning! I hear you! This is some rollercoaster ride we are on! Sorry to hear the pathology report has created new fears and concerns. I certainly understand the fear of having the cancer metastasize elsewhere in your body and the desire to do everything reasonably possible to keep it at bay. As you know I am still struggling with the AI question.

    I do think visiting with a MO you trust might help - I feel my primary care doc is more adept at looking at my overall health not just the cancer. I don’t know if a I mentioned before but she suggested testing my estrogen levels and then having a more in depth conversation about the AI. So I stopped the AI for 14 days, had the bloodwork Monday and have a video consult scheduled for Friday, I have seen some recent research studies that have shown taking the AI 3 days a week can keep estrogen levels as low as daily meds so I asked my oncologist and primary care about that. Oncologist was not receptive, primary care thinks we can consider. I started back on the AI yesterday but am only taking every other day this week, My hope was that a lower dose may keep the cancer at bay and reduce any side effects (typical me - always somewhere in the middle. LOL). Unfortunately, the research studies have been short and there is no evidence yet that a lower dose reduces SE or improves QOL. I’ve also found a study where women take a “holiday” from the AI - taking the drug for 9 months, stopping for 3 months then restarting. The study found that women were more likely to stick with the AI long term w these breaks with no significant increase in risk. So maybe something else to consider. I definitely prefer to take the least amount of medication possible and I do not like treating side effects with more meds - that just seems to be an escalating cycle.

    Good luck. Keep us updated once you know more

  • threetree
    threetree Member Posts: 1,017

    Boysmom19 - I've seen the study about every other day and 3 days a week too, but apparently while it appears to lower estrogen sufficiently, it doesn't reduce side effects. I also read about the 9 months on and then a 3 month break, but I think the population in that study had already done a full 5 years of presumably daily dosing.

    I've been doing every other day now for 2.75 years (as long as I've been taking Letrozole) and am thinking of trying the 3 days a week (MWF) schedule once I hit the 3 year mark. My oncologist doesn't approve of any of this, but I do think it helps keep me going for the long haul. Just telling myself, "but tomorrow I don't have to take it", really helps me continue to take it on the other days. I also can't help thinking that even if the side effects are no better with the lower amounts (because they lower estrogen just the same as the recommended amounts, and the side effects are due to the low estrogen), it is still better to put less of that drug in your system overall and for the long term; causing less likelihood of the heart problems, possible earlier dementia etc. that can develop later, due to taking it long term.

    We'll never know, because some people get recurrences while they take it at the recommended levels, some get recurrences after they quit taking it, and then there are those who just "said no" to any dose and never have a recurrence. Collective statistics definitely show an advantage to taking an AI at the recommended level, but there is a "line" to consider and weigh, and I guess we all have our own individual tipping point.

    I agree with you wholeheartedly that adding more drugs to combat side effects is a real bad road to go down, and it sets up a real vicious, toxic, and dangerous cycle.

  • mavericksmom
    mavericksmom Member Posts: 996

    Hi threetree and boysmom! I too am not a fan of taking more drugs to combat what AI would do. That was the reason I stopped. I am bummed that I need to revisit an issue I thought I had "put to bed," but I do what I think is best at the time. I wasn't opposed to listing to the new MO, in fact, at the time, he seemed to agree that my chances for recurrence were small.

    But none of us, patients or doctors, can know for certainty how we as individuals, will continue with breast cancer. When I had it the first time, IDC, it was only 1cm and I was treated with chemo and radiation. I felt I had over-kill treatments, definitely no pun intended! At that time, I was told, "if you survive 5 years cancer free, each year the chance lessens!" What they didn't say was, while that may be true of some, or even most, it isn't true for all!

    I do not fault MO's for pushing IA's. Until something better is invented, they must work with what they have! They see so many deaths from this disease. But sometimes the very treatments they recommend, kills, albeit indirectly. My daughter has a good friend and the friend's mom died a few years ago, not from breast cancer, but from her second round of chemo she received prior to surgery. Her blood counts dropped after the treatment as they typically do, but then she got and infection and died of sepsis. It happened so quickly, she was rushed to the hospital, admitted immediately to ICU, and passed away in a matter of hours. Horrible! No one could have predicted that! The doctor certainly didn't want that to happen! In hindsight, there were mistakes she or her family made that might have saved her, but who knows? No one wanted to rush to the ER, especially during the height of Covid, in the pre-vaccination days! Waiting longer than she should have before going to ER was probably a big contributor to her death. Again, who knows? All any of us can do is apply information to our own bodies and hope for the best at the time!

    I have no regrets for not staying on Letrozole, but I am always willing to revisit the AI topic and if need be, change my course of action. I KNOW some day there will be a cure for many, if not most, cancers. Until then, we just do the best we can. Ultimately, we must make the choices we feel is best for us!

    On the lighter side, I work with 6th and 7th graders, and I tell them every year to remember what I am about to tell them. I tell them that there will be many times as a young person, that they will think "I can't wait until I am an adult, and no one will tell me what to do!" (which isn't really true, as most of us have bosses and we need to pay taxes, etc) Then I tell them that once they become adults, there will come a time, probably many times, they will wish someone would just tell them what to do, but they will have to decide for themselves! So true when it comes to taking Aromatase Inhibitors!

    I will let you all know what I decide to do. Until then, I hope everyone has a great day!

  • firewoman
    firewoman Member Posts: 1

    Greetings, I am currently struggling in the first three months of taking letrozole after surgery, chemo and accelerated radiation over two weeks. I am actually trying to construct what I will say to my MO when we meet in a couple of weeks. Like many of you, I was very healthy before this diagnosis and had a pain free life. Now, I regularly have serous pain in my hand and feet joints as well as my back muscles. It is common for this pain to wake me up. I have been using tylenol for the pain which sometimes but not always helps. I guess I did not expect the SE to begin after only 90 days on this drug. One issue is that I do not have SE every day or even continuously. The pain is becoming more serious and I am requiring more tylenol to calm it down and be functional. I am 76 and like many of you trying to finish up my bucket list of projects. I may ask to change and try another AI or Tamoxifen.

  • boysmom19
    boysmom19 Member Posts: 11

    Good morning, Firewoman. I just saw your post and can relate. I had lists of questions for my doctors and specifically asked about cost/benefit analysis. However, it seems no one wants to veer from the recommended protocol. While I understand their hesitancy and the fact they don’t want to be responsible for telling us we can stop the drug only to have the cancer return it is very frustrating for us as we search for answers. I am 71 and also very active and healthy until now. Both my surgeon and radiation oncologist seemed to indicate my risks were low and many patients in my age group chose to opt out but they wouldn’t go further than that. My oncologist just keeps saying try for 3 months. I will say I have been on Anastrozole for about a month or so and have not had any of the SE you are describing. So you may ask about trying it. I do have a couple of friends (younger than me) who could not tolerate the AI and switched to tamoxifen which they have now been on for several years without much trouble. QOL is huge so I hope your doctor will work to find a med you can tolerate without too many SE.

    Praying for you. 🙏🏻🙏🏻

  • threetree
    threetree Member Posts: 1,017

    Firewoman - I will have been taking letrozole for 3 years now in mid January. (I'll be 70 next month - totally mind boggling.) My side effects started right away. Wish I'd had your 90 days (wink). I too am one who had a totally healthy, pain, and drug free life before this cancer diagnosis, so this has been a whole new world for me.

    I am real sorry about what you are going through - this drug is nothing but hell for many of us. It is really hard to decide whether to switch or stick with the "devil you know" as I have done. My oncologist offered to switch me to tamoxifen, but I declined, as my sister had taken it for 2 weeks (20 years ago) and "went crazy" and refused to take any more of anything. Also, I would be very worried about the uterine problems that come with it. Many on this board have described some real bad uterine symptoms, or having to go get uterine checks every 6 mos (yikes and yuck), etc. Additionally, my mother died from a uterine cancer (not tamoxifen or breast cancer related at all), and I just don't want to go anywhere near anything like that. On the other hand, many on here seem to have done fine with tamoxifen for years.

    I understand it's a real crapshoot if you try and switch to another AI also, so I've been real reluctant. I've read both good and bad stories about that on here. Either way, you have to stop the one for awhile and then start another, not knowing whether you might be one that gets a better or worse deal out of the switch. You can always switch back to the letrozole if one of the others doesn't work out, but then I understand that you might not get the same situation you had with it the first time around; could be better or worse. Some seem to have different, better, or worse side effects with the initial drug when they try it again. It all just sounds too risky to me, but many have switched for the better (some for the worse).

    I too have a lot of back pain with this and haven't had much success with Tylenol or ibuprofen, nsaids, etc. None of them work very well, and then they tend to make me feel really lousy on top of it - adding insult to injury if you will. My back pain got so bad last week that I thought it was more than muscles (couldn't bend, twist, and was miserable), so went to the ER. They too thought it could be heart attack, kidney's, and lots more, but after many tests and an IV of a "super nsaid" for pain, concluded it was just "musculoskeletal". I just wanted to come home and burn my bottle of Letrozole.

    I guess my point in all this rambling (still in pain) is that I really sympathize with what you are going through, and that there are just no easy answers for any of us. Like boysmom19 says, the doctors just do not want to deviate from "standard of care" and are real reluctant to change. My oncologist just dismisses all my side effects (she would have called all my back and rib pain that sent me to the ER "heartburn") and will not do anything but offer a switch to tamoxifen. You are not alone, and I really wish you a lot of luck and hope that you can come to a solution that feels right for you.

  • cowgirl13
    cowgirl13 Member Posts: 763

    What a great's just like the 'old days'. really

  • maggie15
    maggie15 Member Posts: 613

    Firewoman (and all): My MO is primarily a researcher and is willing to discuss the science behind my questions. He told me that AIs can cause joint pain because cartilage contains aromatase receptors which attract the estrogen to keep it supple. When AIs block that it can cause cartilage disintegration leading to osteoarthritis and pain. Stopping AIs will prevent further damage but the destruction may not be repaired. About 40% of people are susceptible to this, associated with having up to four identified genetic markers on a chromosome. When I asked about testing for this he told me that the research is still in the cellular stage, but it explains why many people do not have this problem or can take a different med with fewer side effects.

    I am 71 now and for most of my life have always been very active and healthy. I'm not against putting up with side effects if the pros outweigh the cons. I now take iron for anemia in spite of the SEs of constipation with the occasional sudden bout of severe diarrhea (can be pretty embarrassing) since I don't function very well without it. I also ended up with a rare pulmonary SE from radiation which has really crimped my style. I am physically restricted as to where/when/distance I can walk, live the lockdown life to prevent respiratory infections, can't take about 300 meds which exacerbate ILD (including most bc drugs except AIs/SERDs/SERMs) and need to avoid intubation. However, I am thrilled to be off O2 and oral steroids (using the inhaled variety), be able to take a 3 mile walk every morning, and hopefully be around for many more than the one birthday my pulmonologist was afraid I had left. I am not willing to take the chance of making my joints worse (I already have arthritis in a knee, hand and TMJ) never mind the other SEs.

    My MO still recommends 10 years of AIs since that is the proven standard of care in my situation but agrees there is not that much statistical difference between a 12% and 20% risk of recurrence. He admits that all the side effects patients complain about are real and can usually explain why they happen. He is also sympathetic about the risk of ILD exacerbation since some patients do die from this (and other things) in his clinical trials. Everyone has to make the HT decision taking into account their situation and priorities at the time. It's not easy, given the relative risks. I'm glad I was assigned to an MO involved in research who will be truthful with me even if the answer isn't always positive.

  • threetree
    threetree Member Posts: 1,017

    Wow, Maggie15 - That is all very informative and interesting. Can't believe what you've been through either. Glad to see that you no longer need the O2 and can get out and have a good walk, etc. That makes a huge difference.

    I wish I had your oncologist.

    I read a study a few months ago (cannot remember it exactly, so cannot cite, but it was on Pubmed), and those researchers came to the conclusion that it is an open question, especially about the mental/cognitive effects of AI's, as to whether your body really does return to "normal" after you stop taking them. I'm coming to the conclusion that they can do permanent damage, and from what your oncologist told you about the osteoarthritis, it makes sense. From what I've read on this board, it is the muscle and joint aches that some say have not gone away, even months after stopping the drug.

  • maggie15
    maggie15 Member Posts: 613

    Hi threetree: You are right about the mental/cognitive effects of AIs still being an open question. I asked about this, too. My MO recommended this article which deals with these SEs in lab animals since that is the stage the current research is in.

    Interestingly, exercise seems to be useful in preventing the cognitive side effects of AIs but many of the other side effects make users feel less like exercising. I'm glad that researchers are investigating these things but since there aren't definitive answers yet we have to figure it out as best we can. That is why the feedback on threads like this is so valuable.

  • ohionana1605
    ohionana1605 Member Posts: 61

    Maggie, I have same problem. No energy to exercise. I was walking a little when weather was nice but winter is coming to Ohio tomorrow so will have to go to indoor and I just don't feel motivated. Lots of pain in hip area which I guess is arthritis.


  • eleanora
    eleanora Member Posts: 214

    Have just come across this thread and think I've found my tribe! I have read and re-read all of your posts with great interest. I am glad to "meet" you and can relate to each of your experiences.

    For decades I did cardio 5 days/week, strength training and Pilates. I was healthy and felt great.

    Here is my story in case it is helpful to any of you:

    After initial diagnosis at the age of 69, I took anastrazole for 2.5 years. It increased the pain from my pre-existing arthritis and also caused severe muscle spasms. I complained repeatedly, until my MO suggested that I take a 30 day break to see if my symptoms improved. My oncotype 10 year recurrence rate was 10% with AI, so she reasoned that the risk was small. Much as I hated the AI, I clung to it like a security blanket, until the MO recommended scans to confirm that everything was clear. The scans detected 2 active bone mets, one in the right pelvis and one in the skull, and I was suddenly Stage IV. Had I not complained loudly, those Mets might have gone undetected until things were much worse.

    I am now 72, on a regimen of fulvestrant, Kisqali and Xgeva. I had severe GI issues with Kisqali and the dose was reduced to 400 mg. Still have issues, but less severe. The joint and muscle pain is still there, but I am riding a stationary bike each morning for 45 minutes which I find much easier on the joints. I have recently been trying to increase the length of my walks each day, as I find outdoor exercise is much better for my mind.

    I don't know how long I will be able to tolerate the SEs. Much as I am greedy for as much time as I can get, I want to be able to enjoy that time at a reasonable level.

    I hope for good things for each of us.


  • boysmom19
    boysmom19 Member Posts: 11

    Hello Eleanora and others. I too relish everyone’s updates and any new information I can learn. On, the other hand, I also have a desire to just step away from it all and not think about BC, meds and SE!

    I feel that the early reassurance I was given that this was caught early, it was the most treatable and the 5 -10 year survival rate was 98 to 99% may have given me unreal expectations for life going forward. After surgery and radiation, I was ready to return to “normal” and most days that is how I feel. I would really, really like to walk away from the AI although currently I’m not having issues. But I’m afraid!

    I empathize with those of you dealing with severe side effects or even worse - recurrences. And yet it reminds me that with BC it may never be really gone and could be lurking somewhere. I don’t want my worries to become worse than the disease itself.

    Lately, I have been substituting for an elementary school counselor (after being retired for 6 years). This is a new experience for me as I’ve always been a middle school/high school counselor. I’m enjoying it! Anyhow, in my office I have a Worry Monster that gobbles up all the worries it can.The kids love it! I’m thinking Imay take my own advice and give my worries to the Worry Monster and God.

    Have a good weekend, All!


  • threetree
    threetree Member Posts: 1,017

    Maggie15 and all - This is one of the references I had found earlier this year about effects of AI's on our brains. This one shows the negative effects on things like "working memory" and thermoregulation. Thermoregulation problems are ones you don't hear much about, but along with my awful back and rib pain this past week, I've also been feeling extra warm all day long, but with no fever. This is different than hot flashes that come and go; it can be warmth or chills that just hang around, outside of "hot flash mode" These drugs mess with our ability to regulate body temperature. It's not a listed as a letrozole side effect, but if you google things like, "does low estrogen cause _________ (fill in the symptom)", things will come up that say yes, low estrogen does cause ____________. These authors, like many of us, concluded that there's got to be a better way! (I just hate when I read about studies done on animals) - this was was done on marmosets to get a look at the effects on primate brains (poor little things):

    This was another one that I read earlier this year. This talks about cognitive, cardiac, and pre-mature aging problems that are not fully understood and acknowledged. My issue with this one is that while I really appreciate what the author is bringing to light, and would cheer her on to do more research, her concerns about the possible permanent premature aging problems are for the younger women who are given these drugs. What about us "older ladies"?! Being 70 and 80 isn't the same as being 90 and 100, and none of us need to get to a later age any sooner than mother nature planned. It's just as bad to be in your 70's and feel like you're 90, as it is to be in your 40's and feel like your now 70. I'm just shy of 70, and the side effects of this drug, and how I function with it these days, really make me think about how my father was functioning when he was 90. Mentally and physically slow; just puttering around and getting only a few things done during the day. Brain fog, strong aches and pains, etc. Much too soon in life for all these problems, and if they may never go away - what the H!:

    Maggie - I think it was yet another article that I can't find where I had read that it remains an open question whether our bodies really go back to what they were after we stop an AI.

  • maggie15
    maggie15 Member Posts: 613

    Hi Eleanora: Wow! Your story is the first time I've heard of a scan meant to demonstrate that you could stop AIs finding bone mets. I'm sorry this happened but I'm glad you could start the proper treatment before time passed and symptoms appeared. My MO was telling me about one of his clinical trials of elacestrant which is a SERD/SERM (depending on dose) which can be taken orally as opposed to by injection like fulvestrant. It is up for expedited FDA approval this spring for those taking CDK4/6 inhibitors. It seems to have fewer/different side effects when compared to AIs, specifically not much joint pain but nausea more likely. Nobody left the stage 3 trial because of the nausea, however, so maybe it isn't too bad. They are planning to set up additional clinical trials for people on other stage 4 treatments and are hoping to investigate its use for brain mets since it crosses the blood-brain-barrier. It would be helpful to have choices with varied side effects since all drugs can affect individuals differently. I hope the stationary bike keeps working for you and you can get outside to exercise more. That makes such a difference to your wellbeing.

    Threetree : Thanks for the references. I definitely agree that just because you are over 70 you shouldn't be written off as "too old to matter" or be told that side effects should be tolerated because of your age. One of my grandmothers lived past 100 and I still have a 97 year old uncle and a 94 year old aunt with most other relatives having lived until their mid 90's. I have told the occasional doctor that my family history predicts a life expectancy of another 30 years so I should be treated no differently from someone in their early 40's whose family members live to their early 70's.

    And all: Elacestrant came up when I jokingly asked my MO what he was doing for someone like me for whom most bc treatments (tamoxifen, chemo, CDK4/6 inhibitors, PARP inhibitors, immunotherapy) are now contraindicated. He said that after FDA approval they are hoping to set up a clinical trial testing its use in earlier stage bc as an alternative to AIs. They think that it might be more effective and have more tolerable side effects (including fewer menopause symptoms.) There are a few other similar drugs in the pipeline, too. Hopefully in the future they will be able to do genetic testing and pick the most effective treatment with the fewest side effects for each individual. Right now I'm planning to be around to see that happen.

  • lw422
    lw422 Member Posts: 1,366

    Hello all. I'm glad to see some activity on this thread, and at the same time sad to see activity on the thread. I just hate this for all of us.

    I read the information about AIs and hormone blockers, etc. but have nothing to contribute. I'm a "lucky" TN who was diagnosed with IBC, so I hit the jackpot of breast cancer. Thankfully I was "pCR" with pathology last year and was sent out into the world to fend for myself--bald-headed, mono-boob, chemo brain, radiation burns, lymphedema, and all. No further treatments... good luck!! Where the hell did my life go? I see my MO every three months and basically live my life. The minor lymphedema in my right arm was scaring me half to death but I have finally calmed down. We just never get to walk away from the damn horror of it.

    For the most part I don't think about recurrence much, though occasionally I have "one of those days" when terror strikes out of nowhere. I'm usually happy that I don't have to take any more medications, while at the same time feel afraid because I don't have any "protection" that those medications provide. It's a mixed bag but that's my life now.

  • keywestfan
    keywestfan Member Posts: 358

    Maggie15 and all. This discussion right into my current obsessive worry that I've been struggling with and putting off a decision about- whether to resume Arimidex after my hip replacement which was Sept 12. Have been off Arimidex, since June, after taking it for 3 years. Am convinced, some medical scientific papers, that that's what did my hip in, by destroying cartilage,and am worried about the not so good other hip. Am worried about probability of osteoporosis which I don't have yet, and the inflammation AI's cause affecting my new hip as well as fingers, toes, knees…even the minor thought of hair thinning, But must decide now. Will talk with PCP this week, BS's PA, next week and try to connect with MO via portal, since I don't have an appointment til March. He will tell me though to switch pills or go back on. But at almost 89, I fear bone loss and osteoporosis and deterioration of other hip and Zometa or Prolia …

  • maggie15
    maggie15 Member Posts: 613

    Hi Keywestfan: I hope you are recovering well from your hip surgery. According to both my MO and online research AIs can cause cartilage destruction in about 40% of the population. There are markers on a chromosome that are associated with this SE but since the research is still at the cellular stage there is no test to predict who will be affected. Now the only way of knowing is to give the meds a try. My MO did tell me that the cartilage damage is usually permanent.

    Most doctors seem to look at patients through the eyes of their specialty. My MO still recommends 10 years of AIs in my case and estimates that I have an intermediate risk of recurrence (but 10 years on given the high ER+ level.) I have a high risk of fractures and also have osteoarthritis. After dealing with collapsed spines, spontaneous fractures and joint replacements in my grandmother, mother and siblings I am giving higher priority to this than the cancer which does not run in my family. Lack of exercise due to bone/joint problems can also have other consequences. One of my younger brothers who has been sedentary for the past dozen years because of hip replacements and plates to stabilize fractures throughout his body has recently had two strokes. His cardiologist told him that lack of physical activity was a contributing factor.

    I had a rare late side effect from radiation which caused pulmonary fibrosis throughout my right lung. When I optimistically said, "I can live with one lung, can't I?" my pulmonologist told me, a math teacher, a little story. His daughter in fifth grade had come home from school one day and said, "Daddy, math is magic! You can use it to solve all kinds of problems." I laughed and he then said, "Math is magic, medicine is not." Thankfully the fibrosis has not spread to the other lung but the doctor could not reassure me about my outcome.

    This is a decision everyone has to make for their own situation but, as lw422 who is TN said, at least we ER+ people have the choice to accept or reject a treatment which has been shown to help prevent recurrence. Good luck with your decision.

  • racheldog
    racheldog Member Posts: 209

    I had not been back on this site since July since I decided to stop the AI I had trialed for a short time and headed into surgery for a knee replacement. I decided that there was no way I would go through rehab for my new TKR with the brain fog and SE I had started to experience on Letrozole. When you have a joint replacement you need every bit of energy, cognitive function and strength that you need to recover. I am about 90% better but still not 100% with the Knee rehab.

    Maggie15 I sure wish I could have an opinion from him/her for the burning question I have asked of my Orthopedic Surgeon (forget it-they defer to oncology) or my Oncology team about whether or not a new joint "implant" can be worsened or loosened by these AI drugs? I maintain my belief that all these aromatase inhibitors are very toxic. For the past three months in TKR rehab I had all but put Breast Cancer in the back of my mind until I had my follow up with my Oncologist after my (good, thank god) f/u mammogram. Now I am back in this tailspin as the MO pushes to restart an AI. This all brought me back to these support boards. These drugs are a crapshoot for recurrence and I just cannot fathom feeling awful for 5 years.

  • maggie15
    maggie15 Member Posts: 613

    Hi Racheldog, According to my sister who has had more joint replacements than anyone else I know, TKR is the hardest to recover from. Can you put off the decision until you are 100% recovered? I haven't had to ask my MO about joint "implants." He'd probably tell me nobody has done a study of that yet and write it down in his little notebook of ideas for future research. I hope your knee keeps improving. Good luck with your decision.

  • keywestfan
    keywestfan Member Posts: 358

    Maggie15, Rachel Dog …I am 88 years old. I have been on a break from Arimidex since June due to extreme knee pain which turned out to be from bone on bone hip and need for total hip replacement surgery which I had September 12. Am convinced, perhaps wrongly, that Arimidex destroyed my cartilage. I had no joint pain before my 3 years of Arimidex. I have been so troubled by the fear of resuming it, afraid for my new hip, for my bad other hip, for osteoporosis or osteopenia , neither of which I have yet. I messaged my MO yesterday who wanted me back on the Arimidex one week after my hip surgery.. Here was his reply:

    “When we first met, we discussed prognosis with and without the drug. If we knew that you would live to 98, there would be an 18% chance of suffering a breast cancer recurrence during that time without treatment. On the other hand, other things can happen along the way first, so the actual risk is probably only about 10%. A full five year treatment would cut that risk by half, to 5%. You have completed half the treatment at this point, and will have received half of the available protection.

    Bottom line: Stopping now leaves you with about 7% risk for recurrence vs 5% if continuing for full 5 years - only a 2% difference. You would not actually, then, be taking much of a risk by stopping. “

    However, the breast surgeon, who I also messaged replied that I should give resuming Arimidex a try.

    Still debating, though strongly leaning toward stopping after my 3 years on it.. Between a rock and a hard place. Will worry if I go back on it and will worry if I don’t.

  • maggie15
    maggie15 Member Posts: 613

    Hi Keywestfan, It's tough to keep all the doctors happy. I'm somewhat biased since in my family I have seen many problems with osteoarthritis, osteoporosis and joint replacements. Being mobile is so important to QOL. If the cancer ever did recur (which sounds pretty unlikely), it is not an immediate death sentence. Best wishes going forward!

  • minustwo
    minustwo Member Posts: 12,877

    keywest - It's a hard decision. The odds are interesting. I'm only 78, but I know I will always choose QOL going forward from now on. I've had a good life and I really don't want to spend my remaining years "disabled" - especially since my family history leans toward living to 98. Because (thank you cancer) I am in osteoporosis & already broke a bone in my upper arm, I have a Prolia shot every 6 months & will continue that. Likely not anything else.

    P.S. - since I was ER/PR negative, I don't have to face the same choice you are looking at, but I was HER2+, so there's always that.

  • racheldog
    racheldog Member Posts: 209

    I am about 90% back from rehab/recovery after three months post knee replacement. This week I have a follow up with Orthopedic surgeon who I am sure will (again) run from the questions about AI drugs ruining a new implant. They like to defer to oncology. My question will be related to whether bone thinning might cause joint implant loosening. I feel like going to an Orthopedic conference and raising my hand and asking this important question that needs a research study IMO.

    My MO was fine in waiting to consider restart of AI until 2023 and wait until I am at least 6 months out. Plus I will have a baseline bone density done next month. I finally feel like my life is coming back to normal and then here we go again with the pressure of restarting an AI. The MO's mean well and go by protocol but make me feel non compliant by not taking them. In the end, it will be my decision. I just turned 70 so my frame of mind on this is not the same as if I were in my 40's.

  • threetree
    threetree Member Posts: 1,017

    Racheldog - Glad to hear that you are doing better now and making good progress. What an ordeal!

    I too have noticed that other doctors will often refer me back to oncology if I have an AI side effect question. Problem is oncology dismisses and downplays. I also know what you mean about how they are just following protocol and probably mean well but it is no help to those of us going through this. It leaves me to the internet and drawing my own conclusions from what I can read and understand without medical training.

    Love the idea of you attending a conference and bringing this up. Maybe more of us should do this sort of thing?

  • maggie15
    maggie15 Member Posts: 613

    Racheldog: I'm glad you are making good progress with your knee replacement. The trouble with so many decisions we have to make is the lack of research on the specific issues such as the effect of AIs on joint implants. Anything without a large database available seems to be ignored.

    And all: Oncology is not alone in downplaying side effects. My pulmonologist had asked me to wean myself off the corticosteroid inhaler I use to stop the horrible cough I have as a result of radiation induced pulmonary fibrosis. I had been down to 20 coughing fits a day but went back up to over 100 when I tried so he kept the prescription the same. When I went for a pulmonary function test last week my coughing got so bad the tech had to call in the doctor. I was hooked up to a monitor which showed that my BP and heart rate went sky high and my O2 dropped below 60%. The doctor gave me a prednisone injection, O2, and told me that he was upping my inhaler dosage to the max since what happened during the coughing session was dangerous. When he asked why I hadn't contacted him about the terrible cough I reminded him that I had told him it was severe and lasted up to 30 sec, gave me SOB on exertion, could clear a subway car of other passengers, and was mentioned in notes from my PCP, RO and MO as sounding like late stage lung cancer. He did apologize but hadn't believed it until he saw it. Thankfully with the new dosage I'm down to 2 or 3 episodes a day which has improved my life immensely.

    My MO is actually the best at taking my reports of side effects seriously, probably because he spends most of his time running clinical trials where SEs are an important element. Maybe we need to keep logs or video clips since doctors seem to question data less.

    I'm not following my MO's advice of taking AIs for 10 years. He always recommends it but says my reasons are valid and I am making the decision while weighing all possible consequences. I still feel guilty because I don't want to "fail" under his care. He does agree that if I have a recurrence the AIs will work better. They, along with SERDs and SERMs would be my only options because of ILD.

  • weninwi
    weninwi Member Posts: 669

    Glad I found this board! I soon turn 74.

    Like others here I was healthy and active, no meds needed, until my BC dx at age 67. My oncotype score was 18 which meant I was not a candidate for chemo at my cancer center. My 10yr recurrence risk was 11% if I took tamoxifen or 9% if I took an AI drug. I was osteopenic and had watched my mother suffer terribly with compression fractures, so I opted to start with tamoxifen (which can build bone) even though I was post-menopausal. My plan was to split the baby...take tamoxifen for 2.5 years and then switch to the AI drug for 2.5 years. At the 2.5 year mark the doctor I was seeing suggested I stay with "the devil we knew" so I did not switch to the AI drug. But at the 3 year mark I was dx with mets to bone and liver. I first went on Verzenio plus Letrozole and was stable, then Ibrance plus Letrozole and had progression in my liver. Most recently on Everolimus and Fulvestrant, but now with new progression.

    maggie15.........your MO's familiarity with the new SERD Elacestrant caught my eye.

    I just had CT scans that show multiple new mets in my liver and one new met in my spine. I also have the ESR1 mutation so I'm very interested in Elacestrant. I've been reading favorable reports written by Dr. Aditya Bardia on Elacestrant and the Emerald Trial. May I Dr. Bardia your doctor? Elacestrant is reportedly especially effective against the ESR1 mutation. My MO is aware of Elacestrant, but she has said she is not overly impressed with the PFS data, so not sure she would order it for me. It's due for FDA approval in February (I think), but the pharmaceutical company Menarini-Stemline has an Expanded Access program for this drug that can be applied for now.