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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.

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saucy | @saucy | Feb 7, 2020
In reply to @colleenyoung "Hi @mollyjbrown, I appreciate your posting about your experience living with Arimidex (anastrozole). For some people,..." + (show)
@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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jeannie53 | @jeannie53 | Jan 19, 2020
In reply to @cancersucks "You are not the exception 25 to 35 percent of woman have serious enough problems they..." + (show)
@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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1 reply
cancersucks | @cancersucks | Jan 19, 2020
In reply to @cindylb "Glad you caught the cancer early. I had a stage 0 LCIS which 2 years later..." + (show)
@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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1 reply
cancersucks | @cancersucks | Jan 19, 2020

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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cctoo. Catherine Crowley | @cctoo | Jan 18, 2020
In reply to @goldieshostak "I was diagnosed with DCIS, stage 1. I had a lumpectomy in August of 2017 plus..." + (show)
@goldieshostak

I was diagnosed with DCIS, stage 1. I had a lumpectomy in August of 2017 plus radiation and have been on Arimidex ever since ( a year and a half now.) There was no cancer in the lobe and my surgeon said I had the smallest cancer she had ever seen. My question is Do I really need to take the Arimidex since my hair is falling out? I am afraid I will have to wear a wig if I take it for the recommended five years.

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I have read that dcis is not yet cancer, but pre-cancer..so why take the drug???!!! Check books by Susazze Somers on her interviews with prominent MD's....it is all about hormone imbalance...I take beta glucan and Wii be three years cancer free...my cancer antigen test is 5, and anything under 38 is normal says my onc. I had stage 2 because I let lump go for three years before mammogram and disgnosis. I am 83...took no Als..and no radiation and my oncologist says she doesn't know what to make of it!!! She is astounded....there were serious reason I did nothing but lumpectomy.......going to dentist is worse for me!!!! Than lumpectomy.

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sparklegram | @sparklegram | Jan 12, 2020
In reply to @roewes07 "Nanato6~ I was just wondering what your final decision was with the advise of your oncologist..." + (show)
@roewes07

Nanato6~
I was just wondering what your final decision was with the advise of your oncologist on taking an aromatase inhibitor. I am close to 72 and I have been on Letrozole for 2 years. My Oncologist just took me off of it for 30 days to give me a “break”. My joint pain has increased steadily the past 8 months. I had arthritis when I was diagnosed and I have read that A I side effects are worse when you already suffer. Tylenol & Aleve really do not cut the pain. I used to work out 3-6 days a week, walk daily, & bike. Now I read, do art and try not to move.....ahhhh! My Oncologist suggested I start on Tamoxifen to replace the Letrozole. It has it’s own set of bone pain issues.
Thank you for sharing what your final decision.

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I'm following this thread. I took Arimidex for a year and a half and had sever side effects I switched to Exemestane and also had side effects. I'm now taking Tamoxifen and these have their own set! I'm seriously thinking of going back to Exemestane. Not sure yet. I'm waiting for some lab test results.

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KKRogers | @roewes07 | Jan 12, 2020

Nanato6~
I was just wondering what your final decision was with the advise of your oncologist on taking an aromatase inhibitor. I am close to 72 and I have been on Letrozole for 2 years. My Oncologist just took me off of it for 30 days to give me a “break”. My joint pain has increased steadily the past 8 months. I had arthritis when I was diagnosed and I have read that A I side effects are worse when you already suffer. Tylenol & Aleve really do not cut the pain. I used to work out 3-6 days a week, walk daily, & bike. Now I read, do art and try not to move.....ahhhh! My Oncologist suggested I start on Tamoxifen to replace the Letrozole. It has it’s own set of bone pain issues.
Thank you for sharing what your final decision.

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1 reply
francine6829 | @francine6829 | Oct 4, 2019
In reply to @addieg "Any tips for time of day to take tamoxifen? Morning or night? With or without food?..." + (show)
@addieg

Any tips for time of day to take tamoxifen? Morning or night? With or without food? My goal is to mitigate potential side effects as much as possible without resorting to other medications.

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Take in morning. There are possible blot clot risks so you don’t want to take it and then not move around. I always take my pills with food

>

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addieg | @addieg | Oct 4, 2019
In reply to @francine6829 "Quality of life is a piece of cake with Tomoxifen . Some oncologists are in the..." + (show)
@francine6829

Quality of life is a piece of cake with Tomoxifen . Some oncologists are in the dark ages and will not prescribe Tomoxifen for post menopausal women. They are dumb

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Any tips for time of day to take tamoxifen? Morning or night? With or without food? My goal is to mitigate potential side effects as much as possible without resorting to other medications.

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1 reply
francine6829 | @francine6829 | Oct 4, 2019
In reply to @cancersucks "Both radiation and anastrozole cause heart problems . My dr never told me that but my..." + (show)
@cancersucks

Both radiation and anastrozole cause heart problems . My dr never told me that but my cardiologist did

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Recent studies show a 0 percent risk for your heart with radiation. They have new methods

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