Aromatase Inhibitors: Did you decide to go on them or not?

Posted by nanato6 @nanato6, Oct 12, 2018

Nanaloves: I’m about to start arimidex and just feel that the contraindications , bone issues etc. are overwhelming. I’m 70 years old, dodged a bullet I feel with zero stage DCIS but the follow up is pretty much no different then if it was more aggressive. I’ve just done 33 treatments of radiation and now they advise arimidex as a preventative. I’m not sure with the beginnings of arthritis and lower back. sensitivity already that I should take it. Anyone not take it and not have a recurrence within the 5 years.

I wouldn’t think it worth it , how well do you think you will do with out estrogen? I was on it 3 almost 4 months and I suffered severe joint bone problem with extreme muscle loss among other side effects . In the end they claimed 13 percent chance of it coming back not using it 6 percent if I used it . I am 65 and decided not worth it

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@cindylb

Glad you caught the cancer early. I had a stage 0 LCIS which 2 years later became a Stage One. Because the Lobular is trickier, I opted to have a bi lateral mastectomy so I wouldn't have to go through all the constant testing and worry. All that said……I tried the aromatase drugs (Letrozole and Arimidex) and had ALL the side effects (just lucky I guess) and opted not to use them……at Stage 0 and again at Stage 1. BUT, I think I am the exception. I can't tolerate most drugs. There are lots of people who do tolerate them pretty well. I was 56 when I was first diagnosed and am 61 now. I opted for feeling better most of the time vs. the drugs, but why not try them, see how you feel on them and take it from there. I tried 2 different ones and the Letrozole was better than the Arimidex for me. Everyone is different. I wish I could have tolerated them because perhaps it would have stopped my cancer from advancing to a Stage 1 ultimately. If they make you feel bad you can always quit them. If they are tolerable….perhaps you won't have the cancer again???? There are so many tough decisions to make at a time when you are least emotionally able to make them, so hugs to you.

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You are not the exception 25 to 35 percent of woman have serious enough problems they stop the medication .

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@cancersucks

You are not the exception 25 to 35 percent of woman have serious enough problems they stop the medication .

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@cancersucks I often wonder why our doctors don't support us that we are not the only ones that have stopped the medication. Sometimes I feel like I'm the only one that has decided not to take the medication but never get reassurance from the doctors that there are many of us choosing quality of life.

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@colleenyoung

Hi @mollyjbrown, I appreciate your posting about your experience living with Arimidex (anastrozole). For some people, it can certainly be a challenge to manage the side effects. You'll notice that I moved your message to this discussion where women are talking about tough choices: sticking with an aromatase inhibitor and coping with side effects or discontinuing the medication. It is a different risk calculus for everyone and each person experiences side effects differently. Thus, I'm grateful to add your story of how you manage the side effects and the choices you made.

@goldieshostak, you ask a very good question if your risk of recurrence is worth continuing with Arimidex. I encourage to read the post from Molly that was just added above this post. Ultimately the decision is yours. I recommend that you talk with your oncologist to discuss YOUR specific risk of recurrence.

I'm curious if anyone has used the CTS5 calculator (https://www.cts5-calculator.com/) with their oncologist to calculate their risk of recurrence? The tool is meant to be used with your doctor. You can read more about it here: https://www.breastcancer.org/research-news/online-tool-predicts-hr-pos-recurrence-risk

Anyone use it with their doc?

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Ho Colleen, I posted a Anastrozole to the breast cancer thread before I saw this can you move it to this subject? Thanks

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@tessfair1

So hey…bit of a delicate topic here..lol..does anyone else poop Every. Single. Time. they go pee since being on Anastrozole?

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I have been having stomach problems while on Anastrozole with a few "blowouts" every morning after coffee and breakfast and loose stools in the afternoon. Trying to figure out how to help out with this. Anyone have any ideas?

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I definitely do not have the answer but I have similar problems and I am on tamoxifen. I experience nausea along with it mid afternoon, I also have bouts of what I remember “morning sickness” being like especially when I start to fix supper and meat is cooking. I have discussed all this with my oncologist but doesn’t seem to have an answer.

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@pattycincinnati

I have been having stomach problems while on Anastrozole with a few "blowouts" every morning after coffee and breakfast and loose stools in the afternoon. Trying to figure out how to help out with this. Anyone have any ideas?

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@pattycincinnati I had similar problems on anastrozole as well as exemestane plus weakness. I switched my exemestane to the morning and don't take the pill until after I eat breakfast and that seems to help quite a bit.

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@trixie1313

@pattycincinnati I had similar problems on anastrozole as well as exemestane plus weakness. I switched my exemestane to the morning and don't take the pill until after I eat breakfast and that seems to help quite a bit.

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Thanks for this tip. I will try that!

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@jeannie53

@cancersucks I often wonder why our doctors don't support us that we are not the only ones that have stopped the medication. Sometimes I feel like I'm the only one that has decided not to take the medication but never get reassurance from the doctors that there are many of us choosing quality of life.

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I read that 20% of women stop taking an AI inhibitor in the first 2 years. I don't know if they studied the re occurrence rate among those people. I agree that doctors need to support whatever decision we make. I switched to Exemestane from anastrozole, I find the side effect much more tolerable now – I'm hoping to go the full 5 years. Some patients they are keeping them on it for 10 years. I'd like to see the difference in re-occurrence rates in 5 vs. 10 years treatment. I just know the survival rate of metastasized BC is like only 25%.

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I was having pretty severe side effects after a year and a half on Anastrozole, switched to Exemestane, and after a much shorter period and experiencing extreme neck and joint pain. I stopped the Exemestane. I saw my Oncologist and then switched to Tamoxifen. I've been on that since December 2019 and it is a MUCH better choice for me. Best of luck to all of you with whatever AI you choose!

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Posting some good news for a change (well, I hope). I have my FIVE YEAR post mastectomy check up in early June. Due to Covid 19 it will be a phone visit for now. Not sure how that will go exactly. Anyway, I believe that I will find no recurrance of my cancer and that means checkups once a year instead of every 6 months. So, a happy milestone is about to be passed. It will be seven years since my diagnosis for Stage 0 LCIS. I wasn't able to use the AI drugs or Tamoxifen so perhaps I've gotten lucky on this front. Hope so. I am struggling quite a lot with damage to my hand and arm from lymphedema and the cellulits and sepsis I experienced last November. It's been an unexpected pitfall. So, my advice to everyone is…………watch for signs of lymphdema if they fiddled with your lymph nodes. I really thought mine was mild and well controlled and i wasn't careful enough (or just unlucky) and as I approach a time when I could be completely happy at Five Years I'm about 'half happy', ha ha….But…….it's possible to make it through this without the AI's (so far). Hope this helps someone out there to feel a little better if they can't tolerate the pills. Hugs.

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@kathyomaha55

I read that 20% of women stop taking an AI inhibitor in the first 2 years. I don't know if they studied the re occurrence rate among those people. I agree that doctors need to support whatever decision we make. I switched to Exemestane from anastrozole, I find the side effect much more tolerable now – I'm hoping to go the full 5 years. Some patients they are keeping them on it for 10 years. I'd like to see the difference in re-occurrence rates in 5 vs. 10 years treatment. I just know the survival rate of metastasized BC is like only 25%.

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I found the following article of interest, published in the medical journal Lancet last December:

"The benefits of the aromatase inhibitor anastrozole for breast cancer prevention in high-risk postmenopausal women extend well beyond the five-year treatment period, according to long-term data from the International Breast Cancer Intervention Study II (IBIS-II) Prevention trial.

"The new data were featured at a press briefing today at the San Antonio Breast Cancer Symposium and simultaneously published in The Lancet.

"Five years of treatment carries on producing continuing benefits right out to 12 years," study cochair Dr. Jack Cuzick of the Centre for Cancer Prevention, Wolfson Institute of Preventive Medicine, Queen Mary University London, said during the briefing.

"From 2003 to 2012, the study enrolled 3,864 postmenopausal women at high risk for breast cancer; 1,920 were randomly assigned to anastrozole (1 mg/day) and 1,944 to placebo for five years, with similar adherence rates (75% for anastrozole and 77% for placebo).

"Results reported in 2013, after a median follow-up of five years, showed a 61% reduction in new breast cancers (from 4.6% with placebo to 1.8% with anastrozole), and a number needed to treat to prevent one breast cancer in the first five years of 36, Dr. Cuzick reported.

"The new long-term data show there continues to be a "significant" 36% reduction in new cancers in years five to 12 (4.4% in women who took placebo five years vs 3.5% in those who took anastrozole), he said. "This is statistically significant in its own right, and although numerically less than in the active treatment period, not significantly so," he added.

"Over the entire 12-year period, there is a 49% risk reduction with five years of anastrozole (from 8.8% with placebo to 5.3% with anastrozole), with a number needed to treat over that 12-year period of 29, "which is substantially bigger than seen with tamoxifen at this stage, where the number needed to treat was 49 to prevent one breast cancer," Dr. Cuzick noted.

"No excess of fractures, other cancers, cardiovascular disease or major adverse events was seen in the extended follow-up."

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