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Arimidex and permanent damage

HI, all. Looking for some guidance as I am struggling with the decision to take it or not. I am 58 post-menopausal I do not have the BRCA gene mutations. My risk of recurrence with AI is 4% and 8% without. All in all, I've got it pretty good. My lumpectomy was easy. Radiation not too bad. I don't have to do chemo. I feel GREAT physically right now and don't in any way feel sick. I work full time in a job that requires my brain to be functioning well all the time. I walk 3-6 miles a day now. This past weekend I walked a total of 14 miles. I am about 15 lbs overweight and hoping to lose that. I do have some depression/feelings of hopelessness that I now believe are related to decreased estrogen. I'm the primary bread winner in my family with 1 kid in college and the other about to start.

My mother was diagnosed with breast cancer at the same age as me (58). She had the mastectomy, radiation, chemo and at least 5 years of tamoxifen with some significant side effects. About 12 years after her breast cancer, she was diagnosed with multiple myeloma and ended up dying of kidney failure at 73.

My oncologist says - like many posts here - that you can always stop if the side effects are too much. So there is an argument to trying Arimidex and hoping I'm don't have any side effects. But what if I do, then stop taking the medication, but the side effects are permanent? Then I've gambled the small horizon I have to have a decent quality of life.

It feels like this is all just a big gamble no matter what - i just want to fully understand what it is I am risking. Can anyone share any stories about starting Arimidex, and then stopping and to what extend the side effects were permanent?

Comments

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,453
    edited July 26

    Although there are no guarantees nor anyway to predict who may or may not have side effects from Arimidex, reading through these boards does not accurately reflect the real world. People tend to post much more when they are having side effects or any problems and not so much when things are ok. That being said, yes folks do have side effects when taking this drug. I have been a bco member for 12 years but can’t really remember reading any posts about permanent side effects even after stopping the meds. I can’t say that it’s impossible but I think if it does occur it may be rare. I have tried all of the AI’s and had similar but not unbearable side effects. Unfortunately as I’m stage IV, I will only stop taking them when I have progression and move on to the next treatment. As far as I can tell, most folks do just fine with the “take it but you can always stop” plan and there is little to no concern about permanent side effects. The decision is entirely up to you but permanent side effects don’t seem to be a factor*.

    *Again, no promises or guarantees!

  • brutersmom
    brutersmom Member Posts: 687

    I would take it and stop if you have side effects. You don't say what grade you are. I was on arimedex for about a year. For me the side effects were horrible. Back pain, mood swings, agression, night sweats, no sleep. Most people do not have side effects to this extreme. When I stopped arimidex they all went away. Hope it works well for you.

  • quietgirl
    quietgirl Member Posts: 164

    I think one of the hard parts is that in some ways the term “side effects” is overused when it comes to meds. The purpose of an AI is to reduce the hormones in your body or the ability of the hormones to bind with different parts of your body. So if the med is working estrogen is working that’s a desired effect the problem is that the reduction of estrogen results in a variety of things depending on the person in question and those are the things that are often labeled side effects which is why for many people is doesn’t matter which ai they take because they are experience the effects of low estrogen because that’s how their body is effected. Some of the side effects that people experience are on the hand a result of something about how the original drug works on their body (for those people switching meds might offer some relief). For those with effects who stop meds and have no relief it might actually be that their estrogen level is NOT returning to premedication level so no relief. I feel like sometimes the reason why people feel like the doctor is just saying suck it up and deal with side effects is because they don’t accurately explain to the patient that they quite possibly are in that subset of patients where the med working exactly as it is suppose to does in fact put their estrogen at a level that all the effects of low estrogen come raging out. (If you think about it people get hormone replacement therapy quite often to deal with low estrogen during menopause).

    I know I am being very long in an attempt to get to my point. If a side effect doesn’t resolve itself when stopping a med two things can be factoring it 1 it’s taking the body time for the estrogen level to recover or 2 that the estrogen level is not going to recover and it’s possible that the side effect would have happened to that person anyway at some point in time (that’s the stinky possible problem). Of the two age probably factors in being older probably means more recovery time.

    One last thing. For the first two weeks I was on an AI massive headaches and hot flashes. And then everything seemed to even out . Now I have what I consider stressed induced hot flashes. If I am under a time crunch or trying to get a lot done I swear my body seems to go in overload. I guess I just wanted to give you an example of the possibility of extremely liveable conditions. So you have a 92 % chance of being in the clear with out an ai and a 96% chance with. Either way the odds are in your favor but no promises either way. I think the most important thing is that you make a decision that helps you live your best life and that might mean not taking something ever or it might mean giving it a try but it’s entirely up to you. If you take an ai but live in fear of a side effect robbing you of your best life, where’s the joy in that. I apologize for writing a novel.

  • ctmbsikia
    ctmbsikia Member Posts: 735

    I have never heard of permanent damage from Arimidex. If the side effects of the drug are bad and you stop your body should return itself to normal estrogen levels depending on your age and menopausal status.

    I have been taking this drug for 5 years and tolerating it well. Diagnosed at 56. Was most worried about the drugs effects on my bone health. Diagnosed osteoporosis at the beginning too, so I take Prolia, and things have been steady only slight worsening score at my spine. Some aches and pains, and hair thinning.

    I did notice changes in aches at the very beginning, but they say if you can stick it out for about 3 months it usually levels off. For me, it really did. I try to walk everyday and that certainly helps.

    Good luck to you with what you decide. I have an appt. today and deciding on continuing or not.

  • lillyishere
    lillyishere Member Posts: 748

    If you are asking for long-term SE, I believe there is no study on women who have been taking AI and the impact of these meds after 10 or 20 years. These are harsh medications and probably, yes, most of us will have long-term damage. If you currently are in your 50s, when you reach your 70s, the age has an impact, and we're going to have another layer of being a regular user of AI. My theory is that if I can make it alive in 20 years, I will cross the bridge when I get to it. I am younger than you and my current SE has been difficult but I am taking the medication to cut the recurrence as much as I can to raise my kids. BTW, most of us don't have a genetic predisposition to BC. I checked 84 genes that did show no relation to cancer. I don't have anyone in close or far family diagnosed with BC. Cancer can hit us despite a healthy lifestyle, no genetic predisposition, etc.

    What type of BC did you have?

  • maggie15
    maggie15 Member Posts: 551

    I discussed this question with my MO who is primarily a researcher. Joint pain caused by cartilage destruction is one side effect of all AIs that is permanent since the cartilage can't be regrown. This happens to about 40% of people who have one of four SNPs on chromosome 14 while the other 60% without are fine. When I asked about testing in advance he said the expense makes "try it and see" much cheaper. Of course, the amount of damage initially done is minimal if you decide to stop.

    There are so many individual variables that make the right answer different for everyone. I decided to skip them for now with my MO's understanding. If I progress they will be one of the few meds I can take thanks to pulmonary fibrosis from radiation. Good luck with your decision.

  • spookiesmom
    spookiesmom Member Posts: 8,084

    I’ve been on all the AIs. For me, the worst se was joint pain, mainly in my ankles. I’m not taking them now. My 74 year old body is facing the beast for the 3rd time, with old age related aches anyway. I can’t pin the arthritis on the AI.

    Try it, if it’s awful, stop.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,453
    edited July 26

    ”These are harsh medications and probably, yes, most of us will have long-term damage

    Lily,

    That is a very strong statement. Do you have a reference to show that most of us will have long term damage? I am not saying it can’t be true but I am looking for something beyond anecdotal evidence. Aromatase inhibitors were approved for use in 1995/96 so there should be some longitudinal studies underway. Still, I don’t recall reading anecdotes or studies regarding long term damage. Would love a link to a study.

  • moderators
    moderators Posts: 6,966

    @notsureaboutanything, welcome again to our amazing community. As you can already see, there are so many here to help!

    Have you checked out this thread specifically for sharing experiences on Arimidex (anastrozole)?:

    We hope this helps!

    —The Mods

  • lillyishere
    lillyishere Member Posts: 748

    AI have been around for less than 30 years. I don't have any reference if anyone has checked on long-term SE of women who started these meds 30 years ago and I don't know if there is any data available. A quick google said:

    Other side effects such as liver problems or osteoporosis (weakened bones) may remain even after you stop treatment. You should not stop taking Arimidex without first discussing it with your doctor. https://www.healthline.com/health/drugs/arimidex#fa-qs

    I had 2 different oncology nurses who told me that letrozole (which I was taking at that time) is a harsh medication. My friend's sister who is in the medical field refused AI after her lumpectomy. These are only a few cases I have encountered.

    These meds decrease estrogen, the important hormone that keeps our heart, bones, liver, skin, etc. healthy. How healthy are our organs when we reduce estrogen? My biggest fear is dementia.

    Another quick Google: Aromatase inhibitors (AIs) are used as an adjuvant therapy for estrogen-receptor-positive breast cancer and are associated with side effects, including hot flashes, depression/anxiety, and memory deficits severe enough for many women to discontinue this life-saving treatment. https://www.jneurosci.org/content/39/5/918.abstract#:~:text=SIGNIFICANCE%20STATEMENT%20Aromatase%20inhibitors%20(AIs,discontinue%20this%20life%2Dsaving%20treatment.

    I want to address BC sisters that it is very important to take these meds to decrease recurrence risk. Every medication has SE, even aspirin. I am not a doctor.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,453

    I understand what you’re saying and the references that you made to known side effects are verified. I don’t see the leap to most AI users having long term damage from these drugs, absent of evidence beyond anecdotes. However, I know that anecdotal evidence works for some folks. I’m not saying this isn’t possible, just that there seems to be no evidence to support your prediction at this time, which makes it difficult to consider that when deciding whether to take a drug or not.

  • muska
    muska Member Posts: 219
    edited July 27

    I think it’s important to understand one’s risk when deciding to take or not to take. Cancer stage and other characteristics are very important risk assessment points. The OP didn’t mention them and her question is mostly about permanent damage.

    I have been on Anastrozole for over 9 years. I do NOT have any damage to

    (1) cognitive functions. Never stopped working in high stress job requiring focus, multi-tasking, etc.

    (2) joints, mobility, etc. No pain whatsoever from Anastrozole.

    (3) psyche - no mood changes / no depression/ no anxiety

    (4) liver

    (5) osteoporosis. I am getting regular bone checks to monitor

    I have some skin and vaginal dryness that I successfully manage. Not sure it’s from Anastrozole, natural aging or likely both.

    In my case - stage 3 A - I had no doubts about taking the drug because the risk of “permanent damage” like recurrence which would likely be metastatic, is very real.

    I was 54 at diagnosis, will turn 65 in the fall.

  • lillyishere
    lillyishere Member Posts: 748

    I understand. Since there is no research done to prove these drugs safe other than osteoporosis and heart disease, we can't say they are safe or not safe in the long run.

    Before my time, it used to be a time when asbestos and lead paint were considered and proven safe and we know the rest of the story.

    Anyway, I don't want to debate about this subject that none of us know about. Especially with one of my favorite BC sisters x-Bronx :)

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,453

    Yes, it will always be true that the harmful effects of some substances won’t be discovered until decades later. When you’re faced with bc now, I personally wouldn’t give too much weight to something that might happen, and has yet to be proven, decades in the future vs treating a disease that you know for a fact you have now. Again, this may be an important factor in decision making for some but I make decisions based on facts and not what might or might not happen 30-40 years down the line.
    Having grown up in the Bronx, land of many apartment buildings, I well remember lead based paint and asbestos insulation.

  • bennybear
    bennybear Member Posts: 244
    edited July 27

    I too had a number of side effects and had to stop the AIs after trying two of them for six months, I had the usual hot flashes, hair loss, twisted fingers, joint pain, de quervains tensonivitis but the deal breaker was losing 10% bone loss of my spine in the time. And I was also unlucky in that the alendrondate treatment resulted in improvement in my spine but then I also had a stress fracture in my femur.

    At the time the AIs only improved my odds by about 1%, but then this year I had a new contalateral breast cancer. So who knows? I seem to be one to defy the odds.

    So I had long term damage and now am weighing the risk benefits of tamoxifen. Wishing you luck in making the best decision for you and your cancer. I think this is one of the hardest decisions to make.