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

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Comments

  • lime
    lime Member Posts: 8

    Just checking in with a question. I am coming to the end of taking anastrozole for 10 years as prescribed. My question is if any side effects one may have had while taking the anti-hormonal drugs were improved or subsided after completing the protocol, including a possible improvement in bone density. Would love to hear from those who have finished and what your experience was. Thanks!

  • dulcea
    dulcea Member Posts: 226

    Congrats Lime! I have no answer for you as I am just approaching my 1st year anniversary. I can't wait to be in your shoes! I am curious about the side effects going away too, so I'll be keeping an eye on this post.

    I hope you plan on having a big celebration once you are done with it!

  • celiac
    celiac Member Posts: 1,260

    Congrats Lime! I am approaching the 5-year "anniversary" of starting Anastrozole. Waiting to see what the MO says at my Feb appointment and the results of Breast Cancer Index test. Hoping I do not have to continue the AI. Also interested in hearing about the same topics you posed in your post.

  • butterfly1234
    butterfly1234 Member Posts: 2,038

    I’m coming to 5 years on Arimidex and my MO is ordering the BC Index test to determine if I should take two more years of Arimidex.

    Does anyone know the answers to the following questions?

    1. Does taking extended hormone therapy lower the prognostic score of late recurrence?

    2. What factors determine your prognostic score? What if any factors would lower your prognostic score?

    According to the SALSA report, there doesn’t seem to be any statistical benefit to taking extended hormone therapy for an extra 5 years in place of 2. Does anyone have information about this study?

    Any help is appreciated. Thank you.



  • celiac
    celiac Member Posts: 1,260

    Butterfly - I am hitting my 5 yr anniversary on 4/5 and awaiting the same results/discussion with my MO. Great questions you posed. Will "stay tuned" to see what type of responses are given.

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,339

    My MO said 5 years on Arimidex was enough for me, given my age (74 then) and diagnosis. I'd have continued if he thought it necessary. I had no problems with it at all. I did take regular Claritin and it helped my morning "creakiness." (I don't take Claritin now). Also took Fosamax. I was already osteopenic when I started Arimidex. There's been no change over the past 8 years. Every person is different and MO's all have their own take on things. Nothing about BC is easy, especially when deciding on AIs.

    HUGS!

  • butterfly1234
    butterfly1234 Member Posts: 2,038

    Thank you Peggy. Your words ring true.

    CeliaC, I will keep you posted. I have a phone appointment with a supervisor at Biotheranostics and hopefully will get some of my questions answered. Will hop back on here and let you know.

  • harley07
    harley07 Member Posts: 377

    @Lime - congrats on completing 10 years of an AI

    Have any of you ever heard of an MO not recommending an AI for hormone receptive cancer?

    I am coming up on the one (1) anniversary of taking anastrozole. Given that I'm 64 and have had such an early stage cancer, I'm still having a hard time wrapping my head around the need for an AI with a low risk Mammaprint score and PREDICT showing basically no difference in survival if I take an AI or not. I wonder if MO's default to an AI because it's the standard of care? Due to liability or financial concerns? Or don't want to take the time to estimate an.individual recurrence risk?

    Sending good wishes to all for good health!

  • homemom
    homemom Member Posts: 842

    Butterfly1234 I was in your shoes about 2 years ago. I had been on AI for 5 years and was looking forward to leaving that behind me, and the every 6 months check ups too. My MO brought up a study that showed 10 years increased your survivorship by about 13% (I think) and she thought I should do it. I wasn't thrilled so she also said there is a study that shows 7 is as good as 10. So we agreed to another 2 years. About 6 months ago I got a bone scan and the osteopenia was creeping back, so I thought she wouldn't tell me that I should continue. Wrong. Go to my next appointment, (7th anniversary) and she wants me to continue for another three years, go back to a prolia shot every 6 months.

    She told me my lymph node involvement puts me at a greater risk of recurrence. You didn't have any node involvement and your tumor was small, so I'd question your MO a little more.


    If you go to the message board that has links to all kinds of studies, you can find answers to your questions. https://community.breastcancer.org/forum/73/topics...

    I was convinced to continue after reading some of the studies.


    I'll be interested in how your phone call goes.


  • butterfly1234
    butterfly1234 Member Posts: 2,038

    HomeMom,

    Thanks for the reply. I will let you know what supervisor said re: BCI. I am also on prolia. I started out with osteopenia when I started Arimidex. Then osteoporosis and back to osteopenia. I’ve switched over to an endocrinologist to monitor my bone loss and growth. When you stopped Prolia, did you take anything else to help your bone growth?

    I know how you must feel continuing the AI when you thought you were done. I’ll just have to wait and see what the results are. My main purpose in speaking with a rep. is that I can fully interpret the results accurately.

    Be well.

  • homemom
    homemom Member Posts: 842

    Butterfly1234 I first used a script for bone loss early(don't recall the name), after my first bone scan showed osteopenia. It helped, but not as well as my MO wanted so she switched me to Prolia. After a second bone scan showed barely any bone loss, I just stopped getting the injections. Instead she told me that the 1200 of calcium and the 5,000 of Vit D3 should be enough. Another 2 years went by, had the latest bone scan, osteopenia is back (surprise) and now we are back on Prolia, because I am staying on AI for 3 more years. If I don't do the Prolia, I'll end up with bone loss again

  • butterfly1234
    butterfly1234 Member Posts: 2,038

    HomeMom,

    I am seeing an endocrinologist who will take over administering the Prolia injections along with monitoring bone strength via Dexa scans. I’m assuming I’ll be on Prolia for as long as I’m Armidex. It took several injections for the Prolia to move me from osteoporosis back to osteopenia. Keeping the faith.

    Butter

  • celiac
    celiac Member Posts: 1,260

    Diagnostic mammogram and Breast Surgeon visit yesterday - All clear and met the 5 year mark. Breast Surgeon feels that when I meet with MO on 2/23, that will be the end of anastrozole. He also stated that with the circumstances of my tumor (< 1cm, no nodes, HR+/PR+) that MO may not do the Breast Cancer Index test as test results show that in 95% of cases like mine, no additional need for > 5 years. Will wait to hear the "all done" from my MO, but this sounds promising.

  • homemom
    homemom Member Posts: 842

    CeliaC - if I had had your diagnosis my MO would have stopped it at 5 years. My grade and size aren't the issue, it's the node involvement. So three more years I go for a total of 10

  • momwriter
    momwriter Member Posts: 276

    Hi,

    I was triple positive.I did 8 years on tamoxifen, starting during rads. I tolerated it pretty well, and it wasn't clear to me what was a side effect of tamoxifen, what was menopause (I was premenopausal going into my dx). The final 6 months I started feeling some neuropathy in my fingers and feet- tingling mainly, so I asked the NP about it. She said my chart had said 7 years and I had done 8 and it was fine to take a break. My MO then said she'd like me to do 2 years on an AI. I was so disappointed and I've been terrified to start..

    My MO agreed for a longish break for me and said I could take 4 months, as studies have shown breaks to not be harmful.Well I procrastinated because I'm so scared of side effects and it's dragged to about 7. I feel so healthy and cross country ski and hike and plan to do a lot more of that and it's been so nice to be on a break that I kept putting it off because I'm scared.

    But today I took my first Anastrozole. It's Zydus brand. Any tips will be appreciated.I'm wondering if I should take a Claritin with it or Vitamin K or what. I will finally get a dexa now that the latest covid wave is subsiding. I'm going to try to keep a journal of side effects but hopefully I won't have much to record.

    Wish me luck!



  • 5leaf
    5leaf Member Posts: 1

    Momwriter,

    I am in a different place on this journey than you are having just started anastrozole (zydus brand) about 5 weeks ago. Will need to take for 5 years. Like you I was terrified (and I am still concerned) but I read many helpful suggestions on this site before starting. I do take a regular Claritin with the anastrozole. I take the medication after breakfast.. I drink lots of water and try to exercise daily. So far so good - I feel great. I have a dexa scan scheduled in a month - I assume that’s to get a baseline. I will be closely monitored by MO.

    I wish you the best

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,339

    My experience with anastrozole is completely different. I had no reservations about starting it - just so glad there was something out there that could help prevent a recurrence. My only concern was that I'd be allergic to some of the fillers. That turned out to be a non-issue. I was osteopenic when I started in 2014 and still am now. I took Fosamax while on anastrozole and regular Claritin. I was on anastrozole for 5 years and when I stopped so did the Fosamax and Claritin. I did not notice feeling any different while on it than off it. My takeaway is don't assume the worst. Keep an open mind. Many of us have no issues at all.

    HUGS!

  • seagoddess2021_
    seagoddess2021_ Member Posts: 10

    I have been on anastrozole (Zydus) brand for the past 8 weeks. Like so many, I was dreading the side effects after just feeling a bit "normal" after completing chemo. I am so happy to report that so far, no serious side effects. I do feel achy occasionally but try to be religious about working out or stretching every day. Hoping this positive outcome continues!! Hang in there!

  • dulcea
    dulcea Member Posts: 226

    I am allergic and have many sensitivities to SO MANY medications it just isn't funny. That was my only concern with arimidex. Lo and behold, no allergies! I am also glad to report that I can't notice any side effects either (my 1 year anniversary in in three days!). I consider myself lucky to be able to take it with no SEs. I am not sure what Claritin does for people taking this but I'd try it without anything first. If SEs crop up, maybe consider the Claritin.

    My advice is to just try it and don't worry!

    Good luck.

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,339

    Dulcea, I also am allergic to a boatload of medications. Not this one though. I used REGULAR Claritin to help with my morning "creakiness." And it does help - at least for me. It does not help me with my allergies however. Claritin is just one of those weird things that it works but who knows why? I had no other issues in 5 years.

    HUGS

  • racheldog
    racheldog Member Posts: 209

    What is Claritin supposed to help with? Joint pain? Or which side effects?

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,339

    Mild joint pain. If it's really bad Claritin isn't going to help. Remember it is REGULAR Claritin NOT "D".

    HUGS!

  • racheldog
    racheldog Member Posts: 209

    Ok thank you, good to know....

  • momwriter
    momwriter Member Posts: 276

    Dear all,

    Your words are all so encouraging! I was nervous about tamoxifen and it turned out to be completely manageable for years. I will try the Claritin with my Arimadex, finally schedule the DEXA I've put off, and hope for the best! It's encouraging to hear experiences from people at different points in the process. I will do that as well.

    Thank you!!

  • MamaOz
    MamaOz Member Posts: 239

    hi its been awhile for me posting

    So fosomax is helping? Ive been taking arimidex 4.5 years. Rough go on joint pain etc and ive taken a few small breaks occasionally but My bone density is bad

    So far ive refused bone meds but dont think I can anymore and need something. I am too leery of a prolia shot. Any advice would be appreciated!

    Mamao

  • cindyny
    cindyny Member Posts: 1,342

    MamaOz- I didn’t want to take a drug to offset the SE from the AI drug either. But my bones went from no sign of osteoporosis to being osteopenia. So I started taking fosamax generic, it’s alendronate sodium 70 mg tab that I take once a week. It got rid of the osteopenia within the first 8 months and I’m in normal ranges again.

    I won’t lie, there were times when I first started taking it, it seemed to have me spending the day near a bathroom with GI issues.But I think once my system got used to it, that was over.

    You take the pill with a lot of water, must remain upright - no laying down for a while, and no food for 30 minutes. So I ingest the pill with a lot of water and read the newspaper, or check email. There are times I’ll get reading and forget to eat. It’s only once a week, you pick a day and stick with that day. I originally picked Sunday morning but it felt like a burden on a weekend, so I switched to Tuesday morning. It’s doable. I hope when I stop the AI, I’ll stop this as well. I could have started Prolia, but as long as this was working I figured why risk switching. Best of luck to you.

  • butterfly1234
    butterfly1234 Member Posts: 2,038

    I’ve been taking Arimidex and Prolia injections for close to 5 years. I had osteoporosis in my hip and now I’ve moved to osteopenia. With every drug there is a risk vs benefit cost. Fortunately, I’ve tolerated both fairly well. Though I have my bad days.

    I’m at that critical 5 year juncture of whether I should stop taking Arimidex. My MO ordered the Breast Cancer Index (BCI) and I’m very anxious about the results. I started seeing an endocrinologist who will take over monitoring my bone loss and gain and Prolia injections.

    Butterfly

  • MamaOz
    MamaOz Member Posts: 239

    thank you for your info butterfly and cyndi NY

  • Aklynna
    Aklynna Member Posts: 28

    Hello,

    Started on Arimidex last Monday. Had a DEXA scan on Friday. One area came back as low bone mass. It was just barely past the cutoff. Dr would like me to start taking vitamin D and calcium supplements. Has anyone found a good combo that gives you a high dose of both? Or is it better to just take them individually?

    I feel like the hot flashes that I had under control have ramped up again, but so hard to separate one issue from another…is this a SE or just “normal”???

  • cardplayer
    cardplayer Member Posts: 2,051

    Hi Aklynna - I would take them separately. I think most calcium tablets come with some vitamin D but probably not enough. I’ve been lucky with having minimal hot flashes. They’ve been pretty manageable so far; just one or two at night.