Aromatase Inhihibitors: 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.

@kathyomaha55

I recently read that Arimidex can also compromise your immune system. I have asthma & have in the last 5 months had 2 cases of pneumonia. Do you think the AI – had contributed to this? I was not warned of this side effect. I've been on it since Nov. 2018.
Thanks.

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I'll be interested to know the responses to this post.

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The Oncologist has tried me on all 3 hormone suppressant therapies – Tamoxofen, femera and Arimidex. Each one for me has had severe side effects, which include depression( suicidal thoughts) madness (crazy thoughts), severe bone and joint pain in legs, no sleep or nightmares. My next appointment is in a couple of weeks so I don’t know what he’s gonna try next. I just know I can’t take those tablets. Any herbal stuff out there that works?

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Geronimo- the oncologists usually try the 3 AIs- Femura, anestrole and arimidex. Are you sure you tried Tomoxifen ? Tomoxifen does not have joint pain as a side effect.

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@francine6829

Geronimo- the oncologists usually try the 3 AIs- Femura, anestrole and arimidex. Are you sure you tried Tomoxifen ? Tomoxifen does not have joint pain as a side effect.

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Tamoxifen is the one I had suicidal thoughts and severe joint pain

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I am so surprised to hear that. Tomoxifen is the first one without joint pain. Hot flashes yes. What does your oncocytpe and mammoprint test results show in terms of reocurrence risk?

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@geronimo1

The Oncologist has tried me on all 3 hormone suppressant therapies – Tamoxofen, femera and Arimidex. Each one for me has had severe side effects, which include depression( suicidal thoughts) madness (crazy thoughts), severe bone and joint pain in legs, no sleep or nightmares. My next appointment is in a couple of weeks so I don’t know what he’s gonna try next. I just know I can’t take those tablets. Any herbal stuff out there that works?

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@geronimo1 I had terrible reactions to arimidex. After arguing Sith my oncologist, I now have a new oncologist and trying a new pill..exemestane. He is allowing me every third day to take for a month, then every other day for a month, and then every day.
If it doesn't work it doesn't HE said!
So far, small headache and small stomachs ache! No high blood pressure, no suicidal thoughts, and NO bone and joint pain!
Good luck!
We are all here for each other

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My cancer has. 13 % recurrence off medication and 6 % if I stay on the meds . 87 % chance of not having a reoccurrence is how I see it . It was not worth the quality of life I had on them . I also already have heart condition so I decided to go off them
In December . I am doing yoga a couple times a week and other exercise to get strength back . I have or had stage 2 ILC ,

Liked by trixie1313

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cancersucks – Sorry if I asked this before, did you try tamoxifen?

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Good morning! I appreciate this forum!
I'm starting Femara (letrozole) after dozens of hours of researching AI's. I was trying to understand if taking an AI is worth the side effects for someone with stage/grade 1 invasive ductal carcinoma. I mostly read scholarly articles on the US National Institutes of Health website to better understand each drug's safety and efficacy. But I could not find research showing their effectiveness vs not taking them (placebo). This is because AI's are not typically compared to a placebo, but are compared to Tamoxifen. I'm continuing to look and appreciate if anyone finds a scientific study comparing the effectiveness of taking an AI vs. placebo.

The most useful info I found regarding side effects was from a pharmacist who provided the FDA website with the manufacturers product information. Here are the links to the pdf's. I printed each of these (28-38 pages) and compared each of the drugs and categories side by side.
Arimidex (anastrozole), non-steroid: https://www.accessdata.fda.gov/drugsatfda_docs/label/2011/020541s026lbl.pdf
Aromasin (exemestane), steroid: https://www.accessdata.fda.gov/drugsatfda_docs/label/2011/020753s009s011s012lbl.pdf
Femara (letrozole), non-steroid: https://www.accessdata.fda.gov/drugsatfda_docs/label/2014/020726s027lbl.pdf
Hope this helps.

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@lindalm – can you share the similiar link for Tamoxifen?

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@francine6829

@lindalm – can you share the similiar link for Tamoxifen?

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Sorry, I tried but for some reason, was not able to pull up Tamoxifen's info.
Here is the website to search further: https://labels.fda.gov

Here are some other interesting websites:
US National Library of Medicine: https://dailymed.nlm.nih.gov/dailymed/index.cfm
National Institute of Health: https://www.nih.gov/
Clinical trials: https://www.clinicaltrials.gov/
Semantic Scholar: https://www.semanticscholar.org/

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I thought this article might be interesting.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4464018/ is the location.

I tried to highlight key sentences within the article, but there is no formatting permitted here. So I'll just copy and paste those four key sentences at the top with ***, which are taken directly from the study, which is posted in its entirety below. I have added the CAPITAL LETTERS for emphasis.

I personally have tried several of the AIs and SERMs and am using one now to reduce my breast cancer risk, so I am not on a mission to advocate against using the drugs.

Breast Care (Basel). 2015 Apr; 10(2): 141–142.
Published online 2015 May 7. doi: 10.1159/000430877

Aromatase Inhibitors in the Prevention of Breast Cancer
Elmar Stickeler, Chair,a,*,* Tanja Fehm, Participants,b Florian Schütz,c and Marc Thilld
Author information Copyright and License information Disclaimer

***1st sentence of interest***:
After 20 years, tamoxifen led to a 29 % reduction in overall incidence of breast cancer compared with placebo. Of note is the fact that NO REDUCTION IN BREAST CANCER MORTALITY and even an increase in estrogen receptor (ER)-negative breast cancers was observed.

***2nd sentence of interest***:
The key messages of this trial are: 1. less breast cancer incidence WITHOUT ANY BENEFIT FOR OVERALL SURVIVAL. 3. We have seen higher incidence of some cancer disease and deaths in the tamoxifen treated group.

***3rd sentence of interest***
But again, both studies FAILED TO SHOW DIFFERENCES IN THE BREAST CANCER RELATED MORTALITY between the groups treated with AI and placebo.

***4th sentence of interest***
It seems that both tamoxifen as well as AI are able to prevent breast cancer WITHOUT A BENEFIT IN OVERALL SURVIVAL.

———–
Here is the entire article, copied and pasted:

Aromatase Inhibitors in the Prevention of Breast Cancer
Elmar Stickeler, Chair,a,*,* Tanja Fehm, Participants,b Florian Schütz,c and Marc Thilld
Author information Copyright and License information Disclaimer
This article has been cited by other articles in PMC.

Question 1: How Do You Value the Role of Medical Prevention for Breast Cancer with the Knowledge of the IBIS-I Trial Results Presented at the San Antonio Breast Cancer Symposium 2014?
Fehm: In the International Breast Cancer Intervention Study I (IBIS-I), women at high risk for breast cancer had a significant benefit in the prevention of breast cancer from tamoxifen: After 20 years, tamoxifen led to a 29 % reduction in overall incidence of breast cancer compared with placebo. Of note is the fact that no reduction in breast cancer mortality and even an increase in estrogen receptor (ER)-negative breast cancers was observed. Thus, tamoxifen might play a role in the prevention of breast cancer in a subgroup of high-risk patients that is not yet clearly described.
Schütz: The key messages of this trial are: 1. less breast cancer incidence without any benefit for overall survival. However, it was difficult to show a benefit in overall survival due to the very effective medical and surgical intervention in breast cancer patients. 2. Tamoxifen has some severe side effects that may influence patients’ compliance. 3. We have seen higher incidence of some cancer disease and deaths in the tamoxifen treated group.
Thill: Considering the results of the extended long-term follow up (20 years) of the IBIS-I breast cancer prevention trial, there is only a role for the preventive use of tamoxifen in women who have an increased risk of developing breast cancer based on a family history of breast cancer or abnormal benign disease. In the IBIS-I trial a significant risk reduction only for estrogen receptor-positive breast cancer was shown that was maintained in the subsequent years after a 10 year follow up; for ductal carcinoma in situ (DCIS) it was only recorded in the first 10 years of follow up. However, a significant reduction in mortality was not found. Therefore, I would talk with women at risk about a possible prevention by the use of tamoxifen to reduce the incidence but not the mortality of endocrine responsive breast cancer and let the patient decide. Anyway, with 29 for invasive breast cancer and with 22 for all breast cancers the number needed to treat is not very high.
Go to:
Question 2: What Is the Impact of Aromatase Inhibitors in Medical Prevention?
Fehm: Studies such as the IBIS-II trial and the MAP.3 trial could show the impact of aromatase inhibitors (AI) in medical prevention. In the IBIS-II trial, anastrozole significantly reduced the incidence of breast cancer after a median follow up of 5 years: 40 women in the anastrozole group (2 %) and 85 in the placebo group (4 %) developed breast cancer. In the MAP.3 trial, exemestane reduced the incidence of all breast cancers by 53 % after a median follow-up of 3 years. But again, both studies failed to show differences in the breast cancer related mortality between the groups treated with AI and placebo.
Schütz: Any endocrine treatment can reduce the incidence of hormone receptor-positive breast cancer. In IBIS-II the AI anastrozole has shown that it can reduce the incidence of breast cancer effectively in postmenopausal high-risk women. However, like tamoxifen it was not able to give a benefit in overall survival. Surprisingly, most of the side effects that are well known from adjuvant breast cancer trials had not been seen in the IBIS-II trial (e.g.musculo-sceletal events).
Thill: As shown in the IBIS-II trial with anastrozole or in the MAP.3 trial with exemestane, the risk of breast cancer in postmenopausal women with an increased risk of breast cancer was relatively decreased by 65% and 60%, respectively. There was no significant reduction in breast cancer mortality. In the IBIS-II trial the incidence was absolutely lowered by 2.3% for all and by 1.4% for invasive ER-positive breast cancer after a follow-up of 5 years, in the MAP.3 trial the incidence was reduced from 0.55% to 0.19% after 5 years. AI reduced high-grade tumors more effectively than low-grade tumors.
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Question3: Which Group of Patients Would You Think of, to Discuss AI Use for Prevention?
Fehm: AI use for prevention can be discussed in the group of postmenopausal patients included in the contemplated studies: women at increased risk for breast cancer in their family history or patients who had a lobular carcinoma in situ, an atypical hyperplasia, or an ER-positive DCIS treated with mastectomy.
Schütz: Postmenopausal high-risk patients like patients with B3 lesions detected by mammography screening are candidates for AI prevention.
Thill: Along the line with the current data I would consider a preventive treatment with AI only for postmenopausal women with a risk at least 2.0 times higher than in the general population without evidence of severe osteoporosis. Risk factors are family history, atypical breast lesions (lobular carcinoma in situ, atypical ductal hyperplasia) and high breast density. In case of osteoporosis concomitant intake of bisphosphonates would be necessary.
Question 4: In Your Opinion What Would Be the Strongest Objective to Recommend AI for Medical Prevention?
Fehm: The strongest objective to recommend AI for medical prevention is a significantly increased risk for breast cancer. Women have to be postmenopausal. Before starting the medical prevention, it is important to calculate the benefit and the risks.
Schütz: We have to keep in mind that those patients who escaped from breast cancer by using medical prevention may also be saved from breast surgery, chemotherapy, and radiotherapy and its toxicities. Therefore it seems more reasonable to prevent the disease in high-risk patients than detecting it early by intensified screening programs.
Thill: In my opinion, the strongest objective is the prevention of clinically evident invasive and not subclinical in situ breast cancer in a postmenopausal high-risk population. It makes no sense to treat subclinical breast cancers that would be diagnosed in the mammography anyway and call it prevention. The side effects of AI are too troublesome for healthy women.
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Question 5: What Is, in Your Opinion, the Objective to Prefer Aromatase Inhibiors over Tamoxifen?
Fehm: Tamoxifen has a different side-effect profile than AI. Patients treated with tamoxifen have a higher risk for adverse effects like endometrial cancer, stroke, thrombosis, and pulmonary embolism. Postmenopausal women with risk factors for those events should be treated with an AI.
Schütz: It seems that both tamoxifen as well as AI are able to prevent breast cancer without a benefit in overall survival. However, toxicities of tamoxifen seem to be more severe than those of AI, especially the incidence of other cancer and thrombo-/embolic events. AI toxicities are also well known but do not seem to affect patients as much as tamoxifen although a direct comparison has only been done in the adjuvant setting. Therefore AI should be preferred in postmenopausal patients. Tamoxifen can be used in the premenopausal setting.
Thill: Tamoxifen increases thromboembolic and gynecological adverse events. In the IBIS-I trial the side effects were mainly confined to the active treatment period. Nevertheless, the risk of endometrial cancer and thromboembolic events, although it is low, in my opinion would lead to a preference of an AI over tamoxifen if the woman or patient is postmenopausal. In addition, the reduction of invasive breast cancer is higher with an AI than with tamoxifen.

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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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Colleen, Thanks for posting this calculator. I hope all doctors are using this and I hope women will use it as an 'add on' to the other information they receive.

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Hi everyone – new to this forum – in fact, first time posting in a medical forum of any kind. I normally would not do so but I feel a bit trapped. I am a caretaker for my wife (51) who had Stage 2b breast cancer – after going thru surgery, chemo and radio, she went thru estrogen blockers (Aromasen, Arimidex, Letrozole, Tamoxifen. And Lupron). All had devastating anxiety and depression.

The devastating side effects: Every other day (yes this is very weird), we get deep and crippling anxiety and depression. Despite ramping up the anti-depressants to 30 MG per day, it doesn’t help – we still get the same results.

What are our options? People keep saying medicine is quite advanced these days but when I look at these estrogen blockers – they're decades old. Where is all this oncology research going? who has answers?

Are there estrogen blockers that do not have anxiety / depression as a side effect?

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@johnvivian

Hi everyone – new to this forum – in fact, first time posting in a medical forum of any kind. I normally would not do so but I feel a bit trapped. I am a caretaker for my wife (51) who had Stage 2b breast cancer – after going thru surgery, chemo and radio, she went thru estrogen blockers (Aromasen, Arimidex, Letrozole, Tamoxifen. And Lupron). All had devastating anxiety and depression.

The devastating side effects: Every other day (yes this is very weird), we get deep and crippling anxiety and depression. Despite ramping up the anti-depressants to 30 MG per day, it doesn’t help – we still get the same results.

What are our options? People keep saying medicine is quite advanced these days but when I look at these estrogen blockers – they're decades old. Where is all this oncology research going? who has answers?

Are there estrogen blockers that do not have anxiety / depression as a side effect?

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@johnvivian
Very sorry to hear of your wife's struggles (and yours, by extension). Speaking only for myself, I chose to take a half dose of Arimidex because I'm so hypersensitive to most pharmaceuticals. Nonetheless, the Arimidex gave me multiple side effects (the arthralgia being the worst part). I was told to keep exercising daily, take fish oil (which helps with depression), take Ubiquinol for the muscle aches (nothing helps the bone/joint aches)… and keep going. Some days are not bad.

I realize that isn't a lot of help, but, under the circumstances, you might want to consider half a dose of one of the AIs (Arimidex/Anastrozole seems to have the fewest side effects). Your oncologist will not be amused, but it's better than nothing.

As to where does all the research money go to? Breast cancer trials take years/decades to observe useful results for oncologists, and pharmaceutical companies are only looking at what has the highest profit margins, so survivors do the best they can with what is available to them. Yes, it's discouraging, but your wife is lucky to have you in her corner. Stay strong for her.

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