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.

@pattycincinnati

thank you. I started with the Tamoxifen because my onc wanted me to confer with my bone doc before she switched me to the anastrozole as I have been on Prolia for a couple of years, and my bones are not too good. My onc believes the AI's are more effective in preventing a recurrence in post menopausal women and said the Tamoxifen could cause blood clots and uterine cancer. My endocrinologist said I was good to go on the AI.
I'm afraid to start the Exemestane but will do so tonight and hope for the best.

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@pattycincinnati
Don't be afraid to try the exemestane. I tried anastrole and letrozole, but they weren't kind to me. I've been on exemestane for almost a year now and I don't seem to have the terrible bone pain as with the other two. I do get hot flashes, but as long as you dress for them, it's okay. I've recently had a thalamic stroke that gives me worse "heat bombs" than with the AI. All good wishes to you.

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@pattycincinnati

I had many bouts a day of diarrhea while on Anastrozole. Took a 3 week break and pretty well back to normal. Onc switched me to Exemestane. I will start that this evening.

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Best of luck on the Exemestane! I started on Anastrozole, and it gave me some pretty bad ‘brain fog’ and memory issues. I’ve found a few articles on-line about low estrogen from these meds causing memory/cognitive function challenges. I had a similar issue with tomoxifin. I’m now on Exemestane and it’s not perfect, but it’s better for me than Anastrozole or Tomoxifin. Do some research on line for yourself and your individual situation. For me, it’s been a trial and error process. Personally, I don't think any of these drugs are perfect, they all have side effects, but it’s certainly better than a return of cancer!

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@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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In November 2019 I switched from anastrozole to exemestane. My hand joint pain is still there but maybe a 1 as compared to a 7 on anastrozole. Hopefully I can stay on exemestane for the full 3 years remaining. Stay safe & healthy everyone in these challenging times.

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I am perplexed. I have just read on this site that Aromatase inhibitors treat breast cancer without the benefit in overall survival. So could someone possibly explain what the point is to our taking this drug. I have just started this drug and I want to make sure that I am doing the right thing.
Thanks
Katrina123

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@katrina123

I am perplexed. I have just read on this site that Aromatase inhibitors treat breast cancer without the benefit in overall survival. So could someone possibly explain what the point is to our taking this drug. I have just started this drug and I want to make sure that I am doing the right thing.
Thanks
Katrina123

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@katrina123
Hi, Katrina. Perhaps a good place to start would be you pointing out what it is exactly that you're reading?

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@katrina123

I am perplexed. I have just read on this site that Aromatase inhibitors treat breast cancer without the benefit in overall survival. So could someone possibly explain what the point is to our taking this drug. I have just started this drug and I want to make sure that I am doing the right thing.
Thanks
Katrina123

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@katrina123
I don't know if this will help, but this is a calculator that doctor's use to tell you if your chances are high for cancer to return. https://www.cts5-calculator.com/ It's been explained to me that aromatase inhibitors do help your chances. I've tried anastrozole and letrozole but did not do well with them and have been on exemestane now and have few problems with it. Because of the types of cancer I have, will need to be on it for 10 years. I wish you well in your decision.

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I also question the use of these drugs. I was told 87% survival with 83% with no drugs. I did do radiation and a lumpectomy and had a multitude of side effects with the radiation that only happen rarely, so I have decided against one more thing that would put me dealing with side effects. I have a Chek2 minor gene mutation and a possibility of schongrens or some other autoimmune disease that they cannot figure out. I already have osteopenia, some arthritis and the beginning of cataracts from the RAI131 radiation I took for thyroid cancer 3 years ago. It just seems everyone has had issues taking the medication. I have to keep a steady weight to keep my thyroid meds in line as well. I have two friends who never took it and they are six years and 17 years cancer free. I agree with whoever said it is just a personal decision. If mine comes back it is a mastectomy for me.

Liked by trixie1313

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@shelleyc

I also question the use of these drugs. I was told 87% survival with 83% with no drugs. I did do radiation and a lumpectomy and had a multitude of side effects with the radiation that only happen rarely, so I have decided against one more thing that would put me dealing with side effects. I have a Chek2 minor gene mutation and a possibility of schongrens or some other autoimmune disease that they cannot figure out. I already have osteopenia, some arthritis and the beginning of cataracts from the RAI131 radiation I took for thyroid cancer 3 years ago. It just seems everyone has had issues taking the medication. I have to keep a steady weight to keep my thyroid meds in line as well. I have two friends who never took it and they are six years and 17 years cancer free. I agree with whoever said it is just a personal decision. If mine comes back it is a mastectomy for me.

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@shelleyc
Looking at your statement "If mine comes back, it is a mastectomy for me." That's what I thought with regards to ever having chemo, again. But during a conversation with my oncologist (a few years ago), he said that a mastectomy at that point wouldn't help. You might want to speak to your oncologist about that, too.

Liked by kathyomaha55

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@trixie1313

@katrina123
I don't know if this will help, but this is a calculator that doctor's use to tell you if your chances are high for cancer to return. https://www.cts5-calculator.com/ It's been explained to me that aromatase inhibitors do help your chances. I've tried anastrozole and letrozole but did not do well with them and have been on exemestane now and have few problems with it. Because of the types of cancer I have, will need to be on it for 10 years. I wish you well in your decision.

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@trixie1313
From what I read, there are dozens of calculators. I'm guessing that one would have to ask one's oncologist which s/he uses, yes? In addition, wouldn't such factors as type of breast cancer and its hormone receptor and HER-2 statuses need to be included in determining recurrence risks?

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@elizm

@trixie1313
From what I read, there are dozens of calculators. I'm guessing that one would have to ask one's oncologist which s/he uses, yes? In addition, wouldn't such factors as type of breast cancer and its hormone receptor and HER-2 statuses need to be included in determining recurrence risks?

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elizm @elizm
It was used by my oncologist. I also input the information from my pathology report as I wanted to verify the information. Because I have both infiltrating ductal carcinoma and neuroendocrine carcinoma, I opted to go ahead with the aromatase inhibitor. This calculator is used for ER/PR positive tumors. Here is an article that may explain further: https://www.breastcancer.org/research-news/online-tool-predicts-hr-pos-recurrence-risk

Liked by kathyomaha55

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@shelleyc

I also question the use of these drugs. I was told 87% survival with 83% with no drugs. I did do radiation and a lumpectomy and had a multitude of side effects with the radiation that only happen rarely, so I have decided against one more thing that would put me dealing with side effects. I have a Chek2 minor gene mutation and a possibility of schongrens or some other autoimmune disease that they cannot figure out. I already have osteopenia, some arthritis and the beginning of cataracts from the RAI131 radiation I took for thyroid cancer 3 years ago. It just seems everyone has had issues taking the medication. I have to keep a steady weight to keep my thyroid meds in line as well. I have two friends who never took it and they are six years and 17 years cancer free. I agree with whoever said it is just a personal decision. If mine comes back it is a mastectomy for me.

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Talk to your oncologist. If it comes back it most likely will come back in the Brain, bones, lung or liver. So a Mastectomy will not help. After I had all these facts – i decided to take an AI. But it is a personal choice. I read like 20% or so of women stop taking it in the first 2 years of treatment from side effects. Because of my age at the time of diagnosis – 62 – I decided taking an AI was my choice. I want to live another 20 years.

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@elizm

@shelleyc
Looking at your statement "If mine comes back, it is a mastectomy for me." That's what I thought with regards to ever having chemo, again. But during a conversation with my oncologist (a few years ago), he said that a mastectomy at that point wouldn't help. You might want to speak to your oncologist about that, too.

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Yes – it most likely will not return in the breast. I heard of a woman who said that & refused radiation. It came back in her brain & she died,

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@elizm

@katrina123
Hi, Katrina. Perhaps a good place to start would be you pointing out what it is exactly that you're reading?

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@elizm
Following is the information that I was talking about.
Posted by elsie37 @elsie37, Sep 13, 2019
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4464018/ is the location.
elizm…This is all a new journey for me and I am just trying to find out as much as I can about this treatment.

Liked by trixie1313

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@trixie1313

@katrina123
I don't know if this will help, but this is a calculator that doctor's use to tell you if your chances are high for cancer to return. https://www.cts5-calculator.com/ It's been explained to me that aromatase inhibitors do help your chances. I've tried anastrozole and letrozole but did not do well with them and have been on exemestane now and have few problems with it. Because of the types of cancer I have, will need to be on it for 10 years. I wish you well in your decision.

Jump to this post

@trixie1313
Thank you for the information.

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@trixie1313

elizm @elizm
It was used by my oncologist. I also input the information from my pathology report as I wanted to verify the information. Because I have both infiltrating ductal carcinoma and neuroendocrine carcinoma, I opted to go ahead with the aromatase inhibitor. This calculator is used for ER/PR positive tumors. Here is an article that may explain further: https://www.breastcancer.org/research-news/online-tool-predicts-hr-pos-recurrence-risk

Jump to this post

@trixie1313 Thanks, Trixie. It seems to be applicable to hormone receptor positive DCIS, but nothing else… is that correct? I'll have to ask my oncologist in July which calculator he is using for HER2+++ IDC, assuming there is one.

Liked by trixie1313

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