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

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Comments

  • homemom
    homemom Member Posts: 830
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    I'm on year 9 and will do it until year 10. My MO told me "the longer the better". I'm like you, the only issue I've had is bone mass, but am on prolia. I've not seen this calculator you mentioned. She has patients that want to stay on it forever. She isn't a fan of that due to the bone issues.

  • oldladyblue
    oldladyblue Member Posts: 302
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    Hi all, Thanks Harley07 and Ddesim1 for your direct answers to my post. When I can't get straight answers from my doc, it pains me. I thought it was just because our communication was strained during my chemo with unanswered questions about the horrible rash I got (she said it wasn't chemo related, hahahah, ya sure) and me ending up in the hospital with almost no white blood cells) . I figures she thought I was a "hard" case. But, I have to wonder if it's because they don't care or medical science, despite all the money invested in research, still is operating on best guesses?

  • ctmbsikia
    ctmbsikia Member Posts: 758
    edited July 2023
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    Well, I decided to stay on the AI. My MO is fine with it. He tried to say my onco type was low risk (17), and I had to tell him different. That test is a reoccurrence risk for the first 5 years from diagnosis, and also helps to decide which patients may benefit further by having chemo. I am wanting to know about my risk now and up to 10 years and beyond. Estrogen positive cancers can re-occur late. Told him about the CTS5 calculator and my risk was high, and we decided then that is enough. We will take it as it goes. DEXA scan due at the end of the year. If things with my bones get any worse, it could change my mind. Meanwhile, I'm happy he's OK with it and I can have some peace of mind for a little longer.

  • homemom
    homemom Member Posts: 830
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    I will be on it for 10 years December 2024. I'm good with it!

  • annie60
    annie60 Member Posts: 295
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    You all are almost convincing to stay on it longer. I was a five years and done person but now I think I will take the test and see what's what. I'm sure with lymph node involvement, HER2+, and 98% Estrogen, I will need it longer. I hate this. This drug messes with my emotions - I can deal with everything else, but the depression and sudden anger is awful. This is not who I am and I do not like this person. It is not all the time and when it hits, I take a two day break and this helps. Guess I can keep doing this for five more years. I will be 71 by then. Not sure it is the way to go.

  • tobyholicdeb
    tobyholicdeb Member Posts: 10
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    I will be on it for 9 years next month. I pray he takes me off but then I’ll be worrying the cancer will come back. He increased my dose age a year ago and I’ve gained 10-15 pounds more. I’m miserable with the side effects and weight. Cancer just keeps giving and giving😡😡😡😡😡

  • castigame
    castigame Member Posts: 336
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    My Onco APRN mentioned BCI. But she replied that no need and recommended continuation of AI. I knew that and guess no choice other than chugging along

  • homemom
    homemom Member Posts: 830
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    I feel like once you've gone this far on it, just finish it up. I will be a little nervous when I do, it's like a security blanket, yet you look forward to hopefully a better quality of life. I haven't' experienced terrible side effects, but I'm curious what post AI life will look like.

  • annie60
    annie60 Member Posts: 295
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    I have now been diagnosed with osteoporosis thanks to letrozole. I had decided to try and stay on letrozole for at least seven years. But now I am not sure. I hate trying to make these decisions.

  • purplecat
    purplecat Member Posts: 226
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    I’ll be starting this next month, after 5 years of tamoxifen. I’m going to do my best to make it to the two year mark, possibly switching to something else if I can’t tolerate anastrozole, and then we’ll re-assess after that point. My CTS5 score puts me at low risk, and honestly, even with my high anxiety I’m not concerned about distant recurrence from my originally cancer. But I’m told that my risk of developing a new cancer in the other breast goes up half a percentage point every year, and I’d still rather deal with side effects than go through another round of cancer treatment.

  • sunshine99
    sunshine99 Member Posts: 2,699
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    purplecat, I've had no SEs that I'm aware of from the Anastrozle. I'm thankful for that.

  • crsharper
    crsharper Member Posts: 36
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    Hi!

    Has anyone dealt with foot and ankle pain? I don't feel like any other joints bother me, but man oh man are my feet killing me. I am about 50 lbs over weight, so I know that doesn't help. I've been trying to walk, but doesn't seem to be helping. If I've been sitting for any amount of time, when I first get up it is very painful to start walking! I don't want to get off the AI, I know it is helpful and necessary, but man I need this foot pain to go away!! Any suggestions/Help is much appreciated!!!

  • cardplayer
    cardplayer Member Posts: 2,051
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    crsharper- have you been to a podiatrist? I had an issue with plantar fasciitis and did some PT, which helped. I also have neuropathy (from chemo). My foot pain wasn’t related to AI, just my arches are starting to fall. I also found good comfortable tennis shoes and wear them all the time. Hope you find out what’s causing your pain.

  • sunshine99
    sunshine99 Member Posts: 2,699
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  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338
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    Sunshine99, discouraging. How are you doing? Keeping you in my thoughts.

    HUGS!

  • cardplayer
    cardplayer Member Posts: 2,051
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    Sorry to hear about your diagnosis Sunshine99. Take care.

  • sunshine99
    sunshine99 Member Posts: 2,699
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    This is weird. I saw my avatar above, but with no comment. How did that happen? Nothing new going on with me. Just plugging along day to day. I'm off Ibrance due to swallowing issues but continue to take the Arimidex with (thankfully) no issues.

    I hope everyone has a good Friday and a good weekend,

    Carol

  • saleen19
    saleen19 Member Posts: 14
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    I see I'm in the minority here, but I refuse to take any type of aromatase inhibitor. I am 70, had a lumpectomy this year, no lymph nodes involved. I've done my homework, and AIs cause a lot of internal damage. I'm extremely sensitive to any type of meds, which is why the only prescription drug I take is synthroid. It's an individual decision, but I've decided it's a quality of life issue. I'd rather not be miserable for 5 years for something that may not even happen. Aromatase inhibitors are a hard "no" for me.

  • cindyny
    cindyny Member Posts: 1,232
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    Saleen, it’s a personal decision and you’re doing what’s right for you. That’s all we can do.

  • katiec12
    katiec12 Member Posts: 6
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    Hi all, I just had my appointment with the oncologist yesterday and he's given me a prescription for Anastrozole. He told me all the benefits and said 5 years. I have another appointment with him in two months. In 2014 the oncologist put me on tamoxifen but I only lasted 6 months on it due to the side effects. Frankly, the potential side effects of Anastrozole have me depressed before I even take it. The surgery didn't bother me, radiation doesn't bother me much, but the thought of increasing my joint pain or screwing up my sleep even more than normal for five years has me feeling really cranky. I figured this might be the place to vent, ordinarily I'm quite cheerful 😕

  • cindyny
    cindyny Member Posts: 1,232
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    katiec12, this is the place. You can read random posts going back, I think we all had different degrees of SE. Some ladies barely noticed anything, others were severe. Some ladies took it in the AM, I took at midnight - all personal preferences.

    My MO had me take it every other day for a period of time (it’s been 6 yrs ago, I can’t remember exact length of time). She said it was to allow my body to get used to it.

    We also had to remember we were aging over that period of time so some aches and pains were age related and maybe not true SE.

    Give it a try, if you’re up to it. Good luck.

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338
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    KatieC12. Don't anticipate side effects before you've started anastrozole. Each of us is different in their reactions to this drug. I had no problems for the 5 years I was on it. I was creaky in the morning and took a regular (not decongestant) Claritin and that helped (sure didn't work on my allergies however). I took it in the morning. I started with the full dose everyday. My 5 years were up 5 years ago. I think that your problems with Tamoxifen are not necessarily indicating problems with anastrozole. They are very different drugs. Try to be positive. And keep in mind what it is supposed to do.

  • tobyholicdeb
    tobyholicdeb Member Posts: 10
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    I’ve been on Anastrozole for 10 years. I’ve gained 40 pounds, lots of joint aches and pains, sometimes my hands don’t work with small objects(clothespins), insomnia, hot flashes, night sweats, trigger finger(had 3 operated on)……but I won’t stop taking it until my doctor feels I’m safe. Honestly, I can deal with all these symptoms if it keeps me alive. They are just annoying.

  • saleen19
    saleen19 Member Posts: 14
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    Hi katiec12 - I've refused any type of AI. I am 70, already have arthritis and am a light sleeper. I sure don't need any more pain or insomnia. I've worked very hard to improve my sleep quality and have finally gotten to a good place. Quality sleep is essential for healing. And I definitely don't need to speed up my bone loss. It's a quality of life issue for me. At age 70, I want to be able to enjoy what life is left for me. I had a lumpectomy a few months ago for stage 1 breast cancer. No lymph nodes involved and clean margins. I am focusing on healthy eating, exercise and a good night's sleep to support my immune system to lower my chances of recurrence. I am also working with a functional medicine doctor who told me the number one thing to cut out or cut back on is sugar, as it fuels cancer. I am at peace with my decision. I have no idea if I'll have a recurrence or not, but I want to live my best life now. There is a difference between living and existing. Everyone has to make their own decisions, and I do not believe in a "one size fits all" answer. We are all in a different place. Best of luck to you in whatever decision you make!

  • katiec12
    katiec12 Member Posts: 6
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    Thank you for your comments and suggestions. I realized I was unhappy with the way it came about, so will try to improve my behavior with the next doctor and ask more questions. In the meantime, I started the Anastrozole on Saturday and took the second dose on Monday. Will try this for a week and then gradually increase and see how that works. Of course, I am writing this at 5 a.m. but that isn't unusual!

  • saleen19
    saleen19 Member Posts: 14
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    Katiec12 - I'm glad to hear you are starting slowly. I hope that works for you. I thought I would pass along that integrative medicine doctor, Jim Roach, suggested that a three day per week dosing schedule can be just as effective for people experiencing adverse effects of AI. He said it doesn't have to be all or nothing. Just something to think about if a full dosing schedule becomes unbearable. Best of luck to you!

  • sunshine99
    sunshine99 Member Posts: 2,699
    edited July 18
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    @moderators , how do I stop getting notifications for this thread? I've tried deselecting the red bookmark thing, but I still get the notifications when there is a new post.

    Wishing all you lovely ladies good results with few to no SEs.

    Carol

  • moderators
    moderators Posts: 8,287
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    @sunshine99 here you go, but if you need additional help, we can do it!

    https://www.breastcancer.org/community/user-guide/features