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For Arimidex (Anastrozole) users, new, past, and ongoing

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Comments

  • beginagain22
    beginagain22 Member Posts: 100

    kotchaj,

    There is a lady in my breast cancer support group that has been told she will be on Letrozole for life. She has had 2 reoccurrences before being in it

  • cbk
    cbk Member Posts: 323

    Hi ladies-

    Well today was my official 5 years out in my mind. I had a appointment with my oncologist to discuss my go forward with my favorite little pill.

    You can see all my stats below and I didn't mention in them that I'm Brca 2+ But that doesn't seem to factor into how long I need to take an Al since I did all risk reducing surgeries .

    She considers me high risk for a few reasons; relative young age at diagnosis, tumor size over 2cm, and very high oncotype. She discussed me staying on hormonal therapy for 7 to 10 years. I was like I'm not feeling that. This pill has already killed my quality of life beyond what I ever imagined.

    So when pressed she told me an extra 2 years after 5 years would give me a 5 percent greater chance of nonreoccurrence. And went on to say why don't you take a 3 month break after your 5 year anniversary and see how you feel. My breast surgeon totally concurs on that and even taking the pill every other day now.

    If you are on the younger side when you start these Al's and in my case, put in surgical menopause at the same time, the side effects can be brutal.

    I'd like to see the research on taking the pill over ten years to a lifetime. I'm surmising that can't be a healthy choice.

  • kotchaj
    kotchaj Member Posts: 205

    pontiacpeggy, I'm 57 years old, soon to be 58 and was told by my onc that it was to keep my estrogen levels low so that I wouldn't have a reoccurrence. I take Claritin as well and it does help along with Tart cherry juice. I'm also on Verzenio for two years, too.

    This was why I was so curious, I haven't heard of anyone else being told that either about AI's.

    Thanks.


  • laurencl
    laurencl Member Posts: 203

    Has anyone experienced a UTI? Can I bluntly ask symptoms? I have been on Anastrozole for about three years and woke up to burning urination with some blood. Never happened before. Went to the Doctor and gave a urine sample and just got a call back to see him tomorrow (because the little bit of urine I gave was dark). I have had very few SE's.

  • kotchaj
    kotchaj Member Posts: 205

    I've had one before. It was lower back pain, burning upon urination, dark urine. It's so hard to drink enough water with these meds. I think that they all take the fluid right out of our bodies. Hoping that you get relief soon.

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,337

    Kotchaj, makes me wonder if your estrogen numbers were really high. Mine weren't. And I'd gone through menopause 15 years earlier. Was your Oncotype score high? It still seems unusual to me that your onc wants you on AIs forever.

    HUGS!

  • Reckless
    Reckless Member Posts: 50

    Was anybody able to get Teva anastrozole in Walgreens recently? I am in NYC and a Walgreens pharmacist told me todaythat Walgreens terminated its contract with Teva. Does anybody know if it’s true? Thank you!

  • celiac
    celiac Member Posts: 1,260

    cbk - Perhaps you can talk to your oncologist and insist upon a Breast Cancer Index test. This test shows info in re: continuing after 5 years. I hit my 5 years, had the test done & it confirmed stopping at 5 years. Just check w/your health insurance prior to the doc ordering the determine whether a pre-authorization is required. The test is done on the removed tumor tissue. Hope this info helps.

  • 2FriedEggs
    2FriedEggs Member Posts: 324

    I will be on anastrozole 10 years come June. My Onc told me he plans to take me off come June but truthfully I have had minimal side effects and kind of feel like its my security blanket-like if I go off it , cancer will come back. He told me we will discuss it at my 10 year appointment. I am hopeful he lets me stay on it. I did find one article so far to take with me from bbc.com citing a study saying that taking it up to 15 years reduced the risk so I will take it with me to see how credible he believes it to be.



  • jrnj
    jrnj Member Posts: 407

    kotchaj, There is a thread from claireinaz about her dr wanting her to go beyond 10 years. It’s probably because of your nodes and stage. I think they are eventually going to tell us all to stay on it if we can tolerate it. I don’t think they are “killing” the cancer like one dr told me. I think they are keeping it dormant. These meds are killing me.

  • oldladyblue
    oldladyblue Member Posts: 300

    Nice @ 2friedeggs that you've had minimal side effects and have done 10 years! I sure wish I could have minimal side effects. I wish doctors understood what factors make minimal side effects possible in some women and why people like me end up with rampant insomnia, horrible bone pain and the "wicked witch of the West" syndrome (i.e. screaming at strangers while shopping in public and embarrassing my husband but not myself). He's begging me to "get off those d__n pills!"

  • miriandra
    miriandra Member Posts: 1,972

    We endure these potentially debilitating SEs on a regular basis, but a very promising hormone-based birth-control for men was dropped from study because it caused acne and mood swings in some study participants. Boo-freakin'-hoo.

  • kotchaj
    kotchaj Member Posts: 205

    jrnj,

    Thanks for the information on the other post! I agree with the keeping it dormant. I'm getting another tumor marker test done when I go back to my oncologist. I will have been on my new med, Verzenio, 3 months by then along with the Arimidex. I'm not a fan of the joint stiffness, but honestly it's not every day. I'm sorry that you're having such horrible side effects. I feel like I will never go back to the pre-cancer diagnosis me and I miss that person a lot. She was full of life and energy. The new me that is supposedly NED at the present time, is nowhere like that person.

  • ladyc2020
    ladyc2020 Member Posts: 87

    hi ladies, I took a 3 week break from letrozole in April and then started anastrozole. It’s been about 4 weeks on it I think. Side effects are greatly reduced- no brain fog, memory issues now.

    But I did have breakthrough bleeding last week which was a surprise, and what seemed like period pain and clearly I have estrogen in the vaginal area again - discharge, lack of dryness. Not sure if this makes me happy or not. ( I get eligard shots each month to turn off ovaries). I feel like I’m constantly asking my MO about side effects and don’t want to ask again.

    But is this a typical response? Could it mean it’s not a strong enough AI for me? Letrozole had me feeling like I was 95. I feel better with this change but these things have me questioning…


    my bc was 99% ER and 99%PR.

  • jinnynh
    jinnynh Member Posts: 26

    Hi all: I stopped taking anastrozole one month ago. Since I noticed the first symptoms of carpal tunnel about 2 months ago, it has progressed very fast, to the point that I can barely use my left thumb and part of my hand is half numb a lot of the time. I also got Dupuytren syndrome (both hands but painful in my left thumb) AND trigger thumb. All this after 11 months of anastrozole. I take both omega-3, glucosamine, and a host of other supplements, both for my bones (and for cancer) and for my heart. Nothing seems to affect these SE. I feel angry because the doctors seemed to think all this is bearable and worthwhile. As if I should accept having one--maybe two--till now unnecessary surgeries and go on taking the stuff that I'm convinced caused these syndromes. How often should I be getting these operations? They call that quality of life? I don't know what the doctors will say when I see them in October. Oh, and I will also have a molar removed today, though I do not really think that is because of the Arimidex, but who knows?

  • cardplayer
    cardplayer Member Posts: 2,051

    Ladyc2020- I was on letrozole for 6 months and switched to anastrozole. I’ve been on anastrozole for almost a year. I got trigger finger, other joint issues and GI issues from letrozole. The GI issues stopped when I switched to anastrozole. I’ve done PT for the trigger finger and other joint issues, which has helped. I’m post menopausal, so I’m not doing any suppression. I would call your MO. Better to ask. Take care.

  • sunshine99
    sunshine99 Member Posts: 2,474

    jinny, I'm sorry about your SEs and sorry that your MO is downplaying them. I wish I had some answers for you. I hate the trade-off between the meds that are supposed to keep us alive and the stupid SEs!

    (((hugs)))

    Carol

  • oldladyblue
    oldladyblue Member Posts: 300

    Hi ladies, such individual journeys we are each having. I stopped Anastrazole last Saturday after having cut it down to every other day for while. My doctor still hasn't called me back to discuss alternatives nor has the nurse called me for scheduling an earlier consultation than the one already scheduled for June 19th or so. I feel soooooo much better off of that AI. Like another person: pain gone, insomnia gone, emotional roller coaster gone, strength returning, wow. I wish though that those little pills weren't hell in a bottle for me. I wanted the drop in risk that they represented for the future.

  • dulcea
    dulcea Member Posts: 88

    I initially started Arimidex 2/2021 and didn't have any side effects except some brain fog, that eventually stopped, and some hair loss, that also stopped. About November 2021 I started with some joint pain and it just progressed from there to really painful joints with trigger fingers starting as well. In April, my PCP ran a bunch of arthritis tests (all negative) so we chalked it up to the Arimidex. I took a week off and started Letrozole. Oh boy. My brain was SOOOO bad! Forgetting everything! Insomnia!! I was crying on the way to work and the way home from work every day. I just took a two week vacation from that and I'm going back on the Arimidex and will check back in with the oncologist in a month. I guess joint pain and trigger finger is better than no sleeping and lots of crying.

    My oncologist has already told me that I am on this for ten years. I can't even imagine! I reminded her of the study that shows 7 1/2 years shows the same protection as ten years. She said we would see when we get there.

    I hope I don't have to go through the initial side effects again of arimidex because I hate being stupid and my hair has thinned so much already. I guess this is all still better than the alternative. Right?

  • oldladyblue
    oldladyblue Member Posts: 300

    Oh my dulcea, it sounds like Letrozole for you was like Arimidex for me. I was a nut case in pain.... I hope the Arimidex goes easy for you this 2nd time. A friend in CA who was on Arimidex went off for 2 weeks due to side effects, and then went back on with almost no side effects. She's doing great on it after the 2 week break.

  • ladyc2020
    ladyc2020 Member Posts: 87

    card player- thank you. I may call my gyn-ob instead. I’m guessing Letrozole was awful for you too. Hope you can figure out the trigger finger, that doesn’t sound great.

  • racheldog
    racheldog Member Posts: 209

    My onc gave me Anastrozole to try instead of Letrozole. I went off Letrozole (after a 1.5 month trial) because I felt lousy and hate most meds. I also had a family event to go to and did not need to show up feeling crappy. Have not started the Anastrozole yet as I am already believing it will be the same plus it seems like more trigger finger issues on anastrozole. All of this depressing. And hang over your head at night for making decisions.

    Funny that I was blaming the Letrozole for everything but still feel lousy and as of last September I was done with lumpectomy, chemo and Herceptin. Maybe it is just the stress of the whole journey that is coming out now and the stress of needing to take these drugs. I go online and look for percentages of women who threw in the towel on these and it varies from 11% up to 30% for those who just stopped. And how many women just stop and do not even tell their oncs who seem to just dish these out. Lucky for those who tolerate them but from day one I have just felt like the toxicities of these AI drugs overall do not add up to 5 years of misery and crapshoot anyway. I will not add any other drugs or surgeries in my life to combat the effects of the AIs.

  • cardplayer
    cardplayer Member Posts: 2,051

    I'm not sure if it normal aging, my arthritis or the anastrozole that causes the joint pain. My trigger finger is manageable as long as I remember to wear the splint at night. My main complaint is the lack of estrogen (which causes all of the other issues too), but that's necessary based on the estrogen positive BC. I'm able to keep active,which I think helps with my joint and mental health. My MO plans to check my BCI at 5 years to determine if I stay on anastrozole longer of not. I'm at just about 18 months on an AI drug now.

  • threetree
    threetree Member Posts: 1,157

    Racheldog - I've been taking Letrozole for 2.5 years now, and I pretty much always feel lousy. I took about a week long break recently, because I had some post Covid problems, and thought the Letrozole was just adding to it, and I still felt really bad too. I wonder sometimes if I don't chalk too much of feeling bad up to the Letrozole, but I do think it is the overwhelming cause of the misery. I don't think a week or two is enough time to shed the side effects. I've read that it takes a good 4-6 weeks for estrogen levels to return to normal, after stopping, and I've read on here about how many say their brains get better fairly quickly, but that the body and joint aches can last for months,

    Also, you really haven't been done with active treatment all that long, in the big scheme of things, I don't think. It's been about 3 years or so for me, and only recently have I started to notice some overall better feelings and I am not going to urgent care all the time with some weird thing happening to me. I've read where many on here said it took a good 3 years for things to get notably better after active treatment, and I think that might be what I'm noticing in myself. So many continue during that time to struggle with "low numbers" and are anemic, etc. In my case, I kept getting light headed, tingly, stiff and weak in the muscles, and often wound up border line anemic and with electrolyte imbalances, until not all that long ago. I can tell that a lot of that now, was not the Letrozole, but I still have plenty of Letrozole problems, with sore muscles, aches, cognition problems, and lots more. I just don't think you were off of it long enough to really notice a difference, plus you are likely still suffering the negative effects of all the active treatment.

    Also, I have been offered Tamoxifen as an alternative by my doctor, but I've come to the conclusion that this is all basically a 6 of one half dozen of the other situation, and that switching is unlikely to make much difference. I think I'd trade one set of problems for another. I've read on here where some did just that but thought that one set of problems was easier to live with than another, but they are all still struggling in some way. Since I've declined to switch, both the oncologist and the surgeon have sort of pigeon holed me as someone who "won't try" even when help is offered, etc. I don't like their attitude, but I doubt that it's rare. They'll do or say anything practically, to just get you to keep taking one of these AI's.

    You've seen stats of 11-30% for those who quit. I've seen some that range from 30-over 50%. It would be interesting to see what that situation really is and just how well those people fare after quitting (or not starting at all). There doesn't seem to be any data whatsoever out there about that.

  • sallyred
    sallyred Member Posts: 24

    I thought I posted this before, so apologies if it's redundant.

    Does anyone else have a very furry face now that they're on Anastrozole? I guess it's been growing for awhile, but I saw my cheeks when the light was just right, and was appalled at how much fur/fuzz I have. Quite possibly more than on the top of my head at this point.

    I won't rant here, but this is NUTS! And is there help out there? I could live without eyebrows or eyelashes, and personally didn't feel the need to use make up for those or to get a wig (although I've kept my baldness and short fuzzy hair in a cap throughout). But I'm frankly embarrassed to be seen in public as a (over reaction:) bearded lady! Chemo hair loss is temporary (although I think I'll never have the thick curly hair I had before), but this, presumably from the estrogen suppression, seems like it will be a 7-year fiasco.

    I kept good spirits throughout the rest of my treatment (though have some issues with the radiation techs!), but I find this pretty devastating.

  • mojos
    mojos Member Posts: 27

    Sallyred,

    So sorry that you are experiencing this unwanted side effect. I have been on anastroloze for over 2 years and have not had that side effect. Check in with your MO about switching to a different drug.

  • wrmbrownie
    wrmbrownie Member Posts: 14

    I took Tamoxifen for a while then switched to Arimidex. I hadn't had too many issues. I usually just assume all my 'issues' are from chemo so there's nothing huge that stands out. Knock on wood. GL.

  • homemom
    homemom Member Posts: 788

    I've been on AI for 7.5 years. Initially I did have some joint stiffness in the morning, I've never attributed my slight memory and foggy brain issues on the AI, maybe I should!

    My MO wanted me to stay on it for 10 years at my 5 year check up. She pointed to the study that you increase survival by 5%, but also that 7 was as good as 10. We agreed to 7 and then she pulled a switcheroo on me at my 7th year appt. really impressing upon me that because I had node involvement, I should go the 10.

    This last appointment this week she asked me if I wanted off of the AI. She didn't want me to feel bullied into staying on it. Node positives make her nervous. We agreed to see what my bone scan shows next summer. I don't see my bone scan being bad if I'm getting the Prolia. We went down that road once and it worked well on my bones. I'd love to see if the SE I've had (thinning hair and issues with weight loss) would go away if I stopped. I'm not experiencing anywhere near what I've read here, but I'd like to get as close to my prevous normal as possible.

  • keywestfan
    keywestfan Member Posts: 361

    So, with my leg pain, have been really confused about what's causing it. Messaged my MO through the portal, who replied in 7 minutes:

    I've been taking Arimidex since June of 2019. In the past year I've had increased left knee pain( mild osteoarthritis), left lateral leg pain, increased morning stiffness. PT is not helping. I don't know if this is age induced, or because of walking 10,000 steps a day, a SE of Arimidex, or a combination of all three, but it is painful and limiting .Would it pose any danger if I were to take a break from Arimidex for 4-6 weeks? My hope would be that it is not the Arimidex that is causing the problem.

    His reply:

    A six week break is the tried and true way to distinguish joint pain from arimidex vs underlying arthritis. Enjoy the time off and assess for any changes on August 1, then contact me.

    I appreciate how responsive he is- am looking forward to the six weeks. But wish, like you Sandy, I was off an AI forever

  • sunshine99
    sunshine99 Member Posts: 2,474

    keywestfan, what a great and fast response from your MO.

    I'll be looking forward to seeing how you feel once you're off the Arimidex for six weeks.

    BTW, I love how every time I spell a drug, it underlines it like it is a typo. I finally figured out how to right-click on it and "add it to dictionary." We'll see if it remembers - LOL.