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.

Interested in more discussions like this? Go to the Breast Cancer Support Group.

Profile picture for callalloo @callalloo

I know. You, and others here, are helping so many people by sharing your experiences and what you've learned about prevention and, if needed, drugs.

People usually learn things the hard way, not benefitting from the wisdom of others. Mayo Connect is a wonderful resource for changing that process for those who found their way here. (And the others they can in turn help by what they've learned.)

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I should have come on here earlier! Noone told me about the pain of fractures, or the loss of independence.

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Profile picture for windyshores @windyshores

@callalloo you have osteopenia, not osteoporosis, and don't need meds. You have a chance to do things more naturally. Right now, I take Tymlos in the morning and have to stay in bed for 2-3 hours. I don't have Hobson's choice or any choice at all, really!

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I know. You, and others here, are helping so many people by sharing your experiences and what you've learned about prevention and, if needed, drugs.

People usually learn things the hard way, not benefitting from the wisdom of others. Mayo Connect is a wonderful resource for changing that process for those who found their way here. (And the others they can in turn help by what they've learned.)

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Profile picture for callalloo @callalloo

It is low with the caveat that it has only started being tracked recently. (Meaning people could have had in the past and had it attributed to poor oral care, age or just written off as an anomaly.)

I don't think people are sitting around choosing between risking osteoporosis or bone metastasis though. I'm sure that no one wants either one of them.

For me, personally, the myriad treatments for osteoporosis are so unpleasant that I am just motivated to do anything that I can to postpone ever needing them. And hope that far better preventative options become available. I look at young girls (and boys) and the ever-increasing subtle forms of eating disorders and worry about them a lot.

There a lot of Hobsons's choices in medicine unless we can be and remain perfectly healthy, alas.

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@callalloo you have osteopenia, not osteoporosis, and don't need meds. You have a chance to do things more naturally. Right now, I take Tymlos in the morning and have to stay in bed for 2-3 hours. I don't have Hobson's choice or any choice at all, really!

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Profile picture for Colleen Young, Connect Director @colleenyoung

Umm, @pbnew. Thanks for alerting me to the broken video. I will look into this and get back to you with the proper link.
In the meantime, you can see it here:
https://www.facebook.com/MayoClinic/videos/350931292115996

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There are a few 'eating for cancer' videos on YouTube put out on a Mayo Clinic site there. And a Ted talk by, I think, a doctor from Mayo.

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Profile picture for pbnew @pbnew

Link did not go to video etc. Just comments.

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Umm, @pbnew. Thanks for alerting me to the broken video. I will look into this and get back to you with the proper link.
In the meantime, you can see it here:
https://www.facebook.com/MayoClinic/videos/350931292115996

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Profile picture for windyshores @windyshores

@callalloo and others:
https://www.ncbi.nlm.nih.gov/books/NBK534771/#:~:text=The%20frequency%20of%20biphosphonate-induced%20osteonecrosis%20in%20osteoporosis%20is,is%20only%20slightly%20higher%20than%20in%20non-osteoporotic%20patients.?
The frequency of biphosphonate-induced osteonecrosis in osteoporosis is very low, ranging from 0.15% to less than 0.001% person-years of exposure, and is only slightly higher than in non-osteoporotic patients.

BUT 1% to 7% of breast cancer patients with bone metastasis, as explained in the study linked above

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It is low with the caveat that it has only started being tracked recently. (Meaning people could have had in the past and had it attributed to poor oral care, age or just written off as an anomaly.)

I don't think people are sitting around choosing between risking osteoporosis or bone metastasis though. I'm sure that no one wants either one of them.

For me, personally, the myriad treatments for osteoporosis are so unpleasant that I am just motivated to do anything that I can to postpone ever needing them. And hope that far better preventative options become available. I look at young girls (and boys) and the ever-increasing subtle forms of eating disorders and worry about them a lot.

There a lot of Hobsons's choices in medicine unless we can be and remain perfectly healthy, alas.

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Profile picture for Angie Murad, Patient Educator @muradangie

Hi @pbnew
The Cancer Education Center classes related to cancer and nutrition can be found on our Blog's Classes/Resources Tab: https://connect.mayoclinic.org/blog/cancer-education-center/tab/classes-resources/#ch-tab-navigation

We also record past webinars and post the recordings on our Video Library Tab: https://connect.mayoclinic.org/blog/cancer-education-center/tab/ncsd/#ch-tab-navigation
More recent webinars are at the top and older webinars are categorized by topic. One topic is Nutrition.

All classes are free.

If you prefer in-person classes in our Cancer Education Center in Rochester we are located on the Main Gonda Lobby Level we offer a Nutrition for Cancer Survivors on Tuesdays and Thursdays at 10:45-11:30 am and on Wednesdays we offer Nutrition During Cancer Treatment also at 10:45-11:30 am.

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Thanks.

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Profile picture for Colleen Young, Connect Director @colleenyoung

@muradangie would you mind posting links to free webinars or classes (past and future) related to cancer and nutrition offered by Mayo?

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Hi @pbnew
The Cancer Education Center classes related to cancer and nutrition can be found on our Blog's Classes/Resources Tab: https://connect.mayoclinic.org/blog/cancer-education-center/tab/classes-resources/#ch-tab-navigation

We also record past webinars and post the recordings on our Video Library Tab: https://connect.mayoclinic.org/blog/cancer-education-center/tab/ncsd/#ch-tab-navigation
More recent webinars are at the top and older webinars are categorized by topic. One topic is Nutrition.

All classes are free.

If you prefer in-person classes in our Cancer Education Center in Rochester we are located on the Main Gonda Lobby Level we offer a Nutrition for Cancer Survivors on Tuesdays and Thursdays at 10:45-11:30 am and on Wednesdays we offer Nutrition During Cancer Treatment also at 10:45-11:30 am.

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Profile picture for callalloo @callalloo

I have read of teeth falling out, as well as dental implants becoming 'unincorporated' in the jaw as a result of BRONJ (bisphosphonate related ostenecrosis of the jaw) and a friend on Zometa was told that she should take it for no more than 3 years 'to be safe.' The jawbone doesn't just die, it loses blood supply, ergo the risk of any oral surgeries that leave tissue that needs to heal is that cannot in the absence of blood supply. And infections in open remaining tissue are extremely difficult to treat as there's inadequate blood supply to carry antibiotics to the site.

I have a great prosthodontist (and two dental implants) who's had to decline patients on some of the osteoporosis drugs because of the difficulties. He knows of no others who are willing to treat patients with osteonecrosis of the jaw (which one oncologist whose opinion I read thinks is a misnomer and that the condition 'looks more like osteomyelitis' to him).

Dr. S. told me how difficult it is for BRONJ victims to get help and it's a condition devoutly to be avoided in any way possible in my opinion. And caused me to improve diet and get back to the gym in hopes if keeping osteoporosis far away.

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@callalloo and others:
https://www.ncbi.nlm.nih.gov/books/NBK534771/#:~:text=The%20frequency%20of%20biphosphonate-induced%20osteonecrosis%20in%20osteoporosis%20is,is%20only%20slightly%20higher%20than%20in%20non-osteoporotic%20patients.?
The frequency of biphosphonate-induced osteonecrosis in osteoporosis is very low, ranging from 0.15% to less than 0.001% person-years of exposure, and is only slightly higher than in non-osteoporotic patients.

BUT 1% to 7% of breast cancer patients with bone metastasis, as explained in the study linked above

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Profile picture for Colleen Young, Connect Director @colleenyoung

@pbnew and others, you might be interested in this past webinar.
– Video Q&A Cancer-Fighting Foods https://connect.mayoclinic.org/webinar/cancer-fighting-foods/

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Link did not go to video etc. Just comments.

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