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

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Comments

  • mysticalcity
    mysticalcity Member Posts: 184
    edited April 2023

    I am also approaching 5 yrs. on anastrozole in June 1st. I have osteoporosis and am doing Osteostrong and a supplement regimen to address that and had positive results on my last dexa scan.

    My MO always let her patients take up to a 2 week break yearly if wanted--I did it a couple of years over holidays to help with aching joints and brain fog issues, but overall I tolerated anastrozole fairly well.

    She also recommended the BCI (breast cancer index) test to see if extended use would be of benefit. My results came back very low chance of recurrence and so she is stopping me at 5 year point--she said all the long term side effects (bones, cholesterol, liver) are then not worth continuing the anastrozole. I did want to mention for others that if your insurance does not cover the BCI test that the BCI test provider does offer a one time self payment option that is greatly reduced over the list price.

    Debal you should talk to the company and/or your provider about your score--my oncologist seemed to feel strongly since the BCI showed I had low chance of recurrence that the benefits of stopping the AI was far greater at this point than any minimal benefits of continuing.

  • italianchef
    italianchef Member Posts: 13

    I am in my second month taking Anastrazole along with monthly Zolodex injections. I'm curious when folks started to experience the most side effects. So far it has been just hot flashes.

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,337

    ItalianChef, I never did experience much in the way of side effects. I got a bit more creaky in the morning so I took regular Claritin (it didn't help my allergies so I also took Benadryl at the same time). No hot flashes (didn't have any when I went through menopause). I'd have done more than 5 years but my MO said in my case it wasn't necessary. I also took Fosamax with no trouble.

    Your Zolodex is likely contributing to your hot flashes.

    I wouldn't anticipate side effects. There are many of us who don't experience them. And many who do. Just plan on not having problems. If they crop up, this group will have lots of support and ideas to help you. Good luck!

    HUGS!

  • gussy
    gussy Member Posts: 77

    Mysticalcity - my experience is similar with 5 years on three different anti-estrogen drugs. Finally had few to no side effects with Letrozole. I will be going off of it at the end of May as my test showed no benefit after 5 years and a 2% risk of recurrence. One less pill to take!

  • mactaz
    mactaz Member Posts: 592

    I did experience some side effects and they probably started in the third month. First thing I noticed was I was losing weight - that went on for about 5 months then leveled out. In about month 4 I started experiencing depression so my oncologist took me off for 4 weeks to do a reset - then started taking again. That helped and didn't have that issue after that. I also experienced significant aches and pains in the joints - primarily in my knees. I started taking shots (EUFLEXXA) in my knees which helped dramatically and allowed me to do most anything I did in the past. I was on for three years and my oncologist took me off due to the aches and pains since my estrogen was not excessively high when I was first diagnosed with triple positive. I will say that once I went off of anastrazole I started to gain my weight loss back…it has been a struggle to keep it off.

  • bigpeaches
    bigpeaches Member Posts: 238

    I've been on Arimidex, Zoladex, and Xgeva for 5 years (alone with other things), thankfully I haven't had much in the way of side effects besides the occasional hot flash but that could be due to the many many drugs I'm on.

  • xsuzx
    xsuzx Member Posts: 2

    I was just taken off of Arimidex after 5 years. Curious if you all feel any different? I gained weight, lost hair, hot flashes, was tired and depressed. Wonder if those will go away after it is out of my system a while?

  • tobyholicdeb
    tobyholicdeb Member Posts: 9

    I would like to know the same thing. I had all the symptoms you had. I’m approaching 9 years on Arimidex in September and I’m hoping he takes me off of them, but I wonder what will happen then???

  • denvmom
    denvmom Member Posts: 23

    Well I have been off Arimidex (Anastrozole) for 6 months. Nothing new, did not lose the weight I gained, did not get any of my lost hair back, my blood pressure did not return to normal, and my sugar level is still elevated, none of which I had before I started the drug, however, not having hot flashed anymore. My Doc took me off of them after 6 years because they did a new test on my tumor, and she said it was no longer necessary for me to be on this drug. Just hope my cancer does not come back.

  • ddesim1
    ddesim1 Member Posts: 10

    mactaz, having a heck of a time with the remodel of the site. A few observations about Arimidex.

    Same here, about the 3 month mark, and thereafter, it is kicking my you know what.

    They didn't develop this with kindness in mind did they. So we have to accept what is hopefully a pill that will keep recurrence at bay. Hopefully.

    But the hot and cold, albeit mild episodes. The JOINT PAIN, oof. The what I suppose is depression which surfaces as anger. Oof.

    Anyway, hope it's better than the alternative.

    If I don't get back in, wishing everyone well.

  • ddesim1
    ddesim1 Member Posts: 10

    Had to log back in, but it's easier to get here.

    BMX, BCI, what are these tests for cancer recurrence?

    And what is Aromasin and where is it in the litany of anti estrogen drugs? It wasn't recommened in the lineup of AI drugs I was told about.

  • cardplayer
    cardplayer Member Posts: 2,051

    Good morning ddesim1

    I started on letrozole (femara), but had GI issues with it. My MO switched me to anastrozole (aromasin) and I’ve been on it ever since. Here’s an article about AI drugs - https://www.breastcancer.org/treatment/hormonal-therapy/aromatase-inhibitors

    BCI is breast cancer index. My MO said it’s a something we’ll evaluate at my 5 year mark to decide if I continue taking anastrozole. She said I could be on it 5-10 years. https://www.breastcancer.org/screening-testing/breast-cancer-index-test

    BMX is acronym for bilateral mastectomy. Unless it’s something new.

  • ddesim1
    ddesim1 Member Posts: 10
    edited May 2023

    Thank you, cardplayer.

    For anyone else who is unfamiliar with the AI names:

    Arimidex (chemical name: anastrozole)
    Aromasin (chemical name: exemestane)
    Femara (chemical name: letrozole)

  • sunshine99
    sunshine99 Member Posts: 2,474

    Here's a "funny" that some of you might appreciate. My DH and I were having dinner with a couple of friends recently who were visiting from northern California. He's an oncologist and she's a family practice MD. She's had breast cancer and is now on AIs.

    Her husband was talking about the future of AI at dinner and, of course, I'm thinking "Aromatase Inhibitors." He was talking about Artificial Intelligence. Boy, did we get a laugh out of that! It's all about your perspective, right?

    Hope everyone has a great Saturday.

    Carol

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,337

    That IS funny. I think it will be a long time before AI doesn't mean Aromatase Inhibitors!!

    Peggy. Diagnosed age 68., Oncotype 13. Everything is doable - not easy, but doable.

    Hormonal Therapy 10/16/2014 Arimidex (anastrozole)

    Radiation Therapy

    Surgery 7/23/2014 Left: Lumpectomy, Sentinel lymph node dissection; Right: Sentinel lymph node dissection;

    DX Grade 2, ER+, PR+, HER2-,

    DX Stage I, Grade 1,

  • ddesim1
    ddesim1 Member Posts: 10

    Would that Aromatase Inhibitors AIs received all the press that AIs the - what is it again? - gets in the next few years.

    We might have a pill that didn't give us side effects that bring us to our knees and make us different people than we were before AIs. But we accept them, because hopefully they work.

  • sunshine99
    sunshine99 Member Posts: 2,474

    ddesim1, I think the AI in the new is Artificial Intelligence.

  • ddesim1
    ddesim1 Member Posts: 10

    Yes, sunshine99, I know. Sadly, no one understands what AI (the tech mumbo jumbo) will do for or against the world. But money will be thrown at it since no one knows anything.

    Meanwhile, the AI we rely upon are known entities but aren't of enough importance to the press or corporations or politicians to gain attention.

    But we listen to doctors who tell us to switch AIs when we give them our litany of side effects and know from wonderful sites like this that they ALL have the same side effects and we must endure them under the hope that they will stave off cancer for the next 5/10 years.

    They don't know, society doesn't care.

  • oldladyblue
    oldladyblue Member Posts: 300

    I wonder what computer AIs would say about the pill AIs and outcomes? I still can't really get straight answers from my oncologist about risk statistics other than I had a 12% risk of recurrence per the Oncotype test. At least she doesn't harass me about going back on the pill AIs anymore, although she has no new statistics for me. I just couldn't take the side effects. I still wonder if I should have continued, or tried another one. Only time will tell. I guess the wondering is just gonna go on.

  • ddesim1
    ddesim1 Member Posts: 10

    So true oldladyblue. Going on two years on Anastrozole and when I brought up the incredible joint pain…her answer? Switch to letrozole. When I looked up the side effects of letrozole? You guessed it? Joint pain, and more.

    I have upped my ibuprofen so who knows the side effects from them.

    Whatever. I admit, it could be worse. But moreover, doctors and medical science don't care.

    I wish you well, oldladyblue.

  • harley07
    harley07 Member Posts: 247

    @oldladyblue - I’m sorry to hear you can’t get a straight answer from your doctor on risk of recurrence. I’m in the same situation but at least I feel less alone knowing that I am not the only one. I like definitive answers and it appears there is no such thing in the cancer world.

  • ctmbsikia
    ctmbsikia Member Posts: 749

    Although my next MO appt isn't until the end of July my health anxiety is up just a tick already. At our last visit he tried to tell me I could stop anastrozole at 5 years because my risk was so low. I said, no, I did the https://cts5-calculator.com/ and scored a 12%. High risk of reoccurrence. I suppose I will ask for the breast cancer index test (no matter the cost) and see and decide what to do after that.

    I also broke protocol by not having an MRI this year and not making another appointment to see the SO team. I never thought I'd be the type to let my insurance coverage dictate my health care, but I did. The premiums and high deductibles have become harder to cover with me being a widow with 1 income.

    I just had to type that out. I hate that sometimes on this road things don't always go as planned, or a decision you think you are going to make ahead of time, might change during or after a visit with the MO. I guess I'll soon see. Thanks for listening. I hate this fear, I really do, but also, I am grateful to be doing well at 5 years out.

  • homemom
    homemom Member Posts: 788

    My MO has been a great provider, but she can't seem to decide whether I should stay on this for another year! I've been on it for 8.5 years. There are two studies that state staying on Arimidex for over 5 years reduces recurrence by I think another 3-5%. One says 7 years is as good as 10, but the original one is 10 years. My hair has thinned and my bones are taking a hit - currently osteopenia is an issue so I get the prolia shot every six months.

    Each year she has gone back and forth on whether I should stay on it for the 10 or stop when I want. I have a bone scan for the 27th, she doesn't want to make any decision until she sees my scan. Last year she wanted me to decide because the one study said 7 is as good as 10. Who am I kidding? I'll be on this another 18 months!

  • celiac
    celiac Member Posts: 1,260

    For those whose docs are uncertain about continuing AI beyond 5 years - Has your doc ordered a Breast Cancer Index to gauge the benefits of being on for more than 5 years?

  • homemom
    homemom Member Posts: 788

    What is the criteria to get a Breast Cancer Index? Whatever it was, I don't think I qualify.

  • cangold
    cangold Member Posts: 35
    edited July 2023

    Hi Ladies,

    I was on Anastrozole for 2 yrs & 2 months after my surgery, Then I was DX with pre-cancer on my remaining breast and after surgery I was switched to Letozole. The joint pain is about the same.

    I was very surprised , to have cancer again even with the AI's. My estrogen is still ER positive100% . Caught early both times, I still have Angels taking care of me.

  • homemom
    homemom Member Posts: 788

    cardplayer - thank you. For some reason I thought I was ineligible to get that done, but when I read the criteria in that link, it looks like I am. My MO hasn't mentioned it. Maybe I'll shoot her an email. Thanks.

  • ctmbsikia
    ctmbsikia Member Posts: 749

    Have an appt next week. I like my MO and I try to remember he also treats other cancers. I'm not sure he even knows about the breast cancer index test. Do I want to go through the aggravation of will my insurance cover it? Is it going to cost me money? Right now have a $1400 balance on my deductible still to be paid. I guess I will ask and if this test is going to cost me money, I am not doing it. I also skipped an SO appt and MRI this year in order to keep costs down.

    Secondly, the CTS5 or whatever calculator has also shown to be a good tool. It is free and my score is high risk. In my gut and trying to simplify things in my life, is this enough to just make the decision to continue the AI for up to at least 7 years? The prescription costs me $0.00. Yes, my bones have gotten worse, but I am on Prolia.

    I hate this. I am leaning on just continuing. Any input on how you came to your decision is appreciated. I have a week to mull it over and be prepared how to approach my Doc. He does have our last discussion regarding this in his notes.