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.

Americans take ten times more prescription drugs then other Industrialized countries. The medicine I was taking, Anastrozole, gave me bad side effects, after being on the medicine for more then 2 months. It made me so irritable and mean it would have destroyed my marriage and my relationships with family and children. This POST is probably the effects of the Anastrozole still in my system. It was affecting my mental health that I started to drink alcohol, eat tons of carbs, and sugar. I was gaining weight and felt depressed. They offered anti-depressants or mood stabilizers, to combat the side effects. I have never been on anti-depressants. America has 5 percent of the worlds population but uses 60 percent of the worlds anti-depressant medicine. When I went off this medicine I feel like a million dollars, stopped drinking alcohol, started eating healthy, etc.. Maybe, in my case, the Anastrozole is doing more harm then good? I will try another estrogen blocking drug but this would be my 3rd drug. Most important I trust my doctor and team at Mayo.

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Profile picture for pbnew @pbnew

Would you post a link from the education center specifically on nutrition? The link you posted led me to the nutrition specialist service which did not appear to be free.

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@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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Profile picture for pbnew @pbnew

Would you post a link from the education center specifically on nutrition? The link you posted led me to the nutrition specialist service which did not appear to be free.

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@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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Profile picture for windyshores @windyshores

@kilkennyfarmwife I am sorry for your troubles. Have you tried a different manufacturer for your anastrazole? Or tried Femara instead? You could also try alternate days. The difference between a 9% risk and a 4.5% risk seems significant to me, but I understand if that is not how you feel.

I am so grateful for aromatase inhibitors, because they allow us to avoid chemo. But I was lucky in finding Femara easy to tolerate. I switched to brand name Femara from generic anastrazole. In general I do well with TEVA if I have to take a generic.

I believe that Zometa can cause dental problems mostly in cancer patients who take very high doses, and also after several years of use. I am not sure about teeth falling out because jaw necrosis is what we usually hear about. Biphosphonates are useful with aromatase inhibitor treatment because those drugs cause bone loss. I believe that Reclast is gentler than Zometa. My doc even said a partial dose could be used, with Benadryl and tylenol beforehand, hydration and a slower infusion. You could also consider Fosamax orally if you don't have GERD.

Your mother's story is disturbing but 30 years ago they were giving biphosphonate drugs even for early osteopenia and did not yet know that extended use after 5-10 (I am not sure) years would cause brittler bones, and atypical fractures. You don't say how long your mother was on a biphosphonate. Can you tell us?

I have declined many drugs, including blood thinners. However, I have a kid on insulin for type 1 diabetes and an anti-convulsant for seizures. I am grateful to researchers and drug companies for these because without them she would not be alive.

I am on Tymlos now after cancer treatment. Once you have fractures, these bone-growing drugs provide hope. Was your mother ever offered Forteo? I am so sorry for her pain.

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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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Profile picture for kilkennyfarmwife @kilkennyfarmwife

I am stage 1 breast cancer and have been on Anastrozole since last august. I am 64 years old. I have a 9 percent chance of cancer returning if I am not on this medication. I am going off this drug based on the following. The side effects are destroying my quality of life. I am mean irritable, can’t sleep, my chest is tight, I have mucous in my nose, sore throat, headaches and brain fog. When I bring up the side effects the doctor always tells me they can give me more drugs to counter the side effects. They offered me anti depressants. Then it was Zometra for osteoporosis which can cause my teeth to fall out. And they will because I have thinning gums. It is just adding one drug after another drug and for what? Thirty years ago my 86 year old mother went to Mayo Clinic telling the doctors we have a history of osteoporosis in our family. The doctors put her on Fosomax for several years. She paid $350 a month for her medication. The result of this drug did MORE HARM and has made my mother osteoporosis so bad she breaks bones at any little fall. She has lost 7 inches on her height. She has broken her rib by putting on her seat belt. She has broken her back when laying down at a doctor office in her late 70s. She had to fuse her back together at Mayo. Every time she breaks her bones it is a trip to ER hospital and massive rehab with tons of pain. This Easter she fell while using a Walker and is now in hospital and rehab for broken bones! She has been in and out of hospitals because of her osteoporosis and is massive pain! She cries every day. Recently 7 doctors at St Cloud hospital looked at her trying to figure out what happened to my mother. Hell it was the damn drugs they gave my mother thirty years ago that did this to her.

I now follow a wholistic doctor. I have bought myself a Peloton and ride my bike every day. I go to Y and do weight bearing exercises. I have lost 30 lbs and eat healthy. None of this is ever talked about at Mayo while I battle breast cancer. It is drugs drugs drugs! We are in a profit driven sick care system. We pay the most for health care out of any other G-7 country and we have the lowest mortality rate. You need to be your own advocate for your health.

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What your mother has endured is awful. I think that, were she being treated for osteoporosis today, for the first time, the outlook would be more promising.

Fosamax, the first bisphosphonate if I recall correctly was never designed to be given for multiple decades. In fact Merck has consistently declined to design a long-term study of its efficacy and safety. (My career included researching corporations for a Wall Street investment manager. My cynicism was hard-earned and I suspect that Merck prefers to maintain plausible deniabality as the long-term adverse effects lawsuits pile up. And that corporate counsel suggest they not ask 'inconvenient' questions but no one need share my dim view.]

Fosamax was intended to be marketed to women in their early-to-mid 70s at a time when the life expectancy would suggest they'd be on it for a decade at best on average. [Note that now it's being marketed to ever younger women and I wonder why the FDA is silent about that mission creep.]

We've outlived a lot of drugs' usefulness, ironically enough, and that is good news.

I think it's all a balancing act and some people will be, as you are, more proactive in trying to improve the variables under their control and, just maybe, need way fewer pharmaceuticals. And be less willing to take them without some serious pondering of the risk/reward balance. That's good news too ;-).

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Profile picture for windyshores @windyshores

They told me that 30% of grade 3's have low Oncotype scores.

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I've never heard that so have no opinion other than wonder if that is true today, after OnctotypeDX has been offering the DX test for several years now.

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Profile picture for windyshores @windyshores

@kilkennyfarmwife I am sorry for your troubles. Have you tried a different manufacturer for your anastrazole? Or tried Femara instead? You could also try alternate days. The difference between a 9% risk and a 4.5% risk seems significant to me, but I understand if that is not how you feel.

I am so grateful for aromatase inhibitors, because they allow us to avoid chemo. But I was lucky in finding Femara easy to tolerate. I switched to brand name Femara from generic anastrazole. In general I do well with TEVA if I have to take a generic.

I believe that Zometa can cause dental problems mostly in cancer patients who take very high doses, and also after several years of use. I am not sure about teeth falling out because jaw necrosis is what we usually hear about. Biphosphonates are useful with aromatase inhibitor treatment because those drugs cause bone loss. I believe that Reclast is gentler than Zometa. My doc even said a partial dose could be used, with Benadryl and tylenol beforehand, hydration and a slower infusion. You could also consider Fosamax orally if you don't have GERD.

Your mother's story is disturbing but 30 years ago they were giving biphosphonate drugs even for early osteopenia and did not yet know that extended use after 5-10 (I am not sure) years would cause brittler bones, and atypical fractures. You don't say how long your mother was on a biphosphonate. Can you tell us?

I have declined many drugs, including blood thinners. However, I have a kid on insulin for type 1 diabetes and an anti-convulsant for seizures. I am grateful to researchers and drug companies for these because without them she would not be alive.

I am on Tymlos now after cancer treatment. Once you have fractures, these bone-growing drugs provide hope. Was your mother ever offered Forteo? I am so sorry for her pain.

Jump to this post

I would add one thing. A lot of women with breast cancer take both chemo and aromatase inhibitors. They are not substitutes for each other, though some oncologists only recommend the AIs for what they evaluate as low recurrence- rate risk cancers.

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Profile picture for Colleen Young, Connect Director @colleenyoung

@kilkennyfarmwife,
As @auntieoakley mentioned, you may wish to contact Mayo Clinic’s Office of Patient Experience.
Mayo Clinic Office of Patient Experience
Phone: 844-544-0036 (toll free)
Email: opx@mayo.edu

Have you ever explored the webinar offerings of Mayo's Cancer Education Center? They've moved many of their classes about nutrition, exercise, stress, bone health, etc. online so that they are accessible whether you're at Mayo Clinic or back at home. Follow the Cancer Education blog and class listings here: https://connect.mayoclinic.org/blog/cancer-education-center/

@muradangie and @roch may have more tips of classes and services available to you as a Mayo Clinic breast patient. For example, did you see an oncology dietician/nutrition specialist? Did you know that this sevice exists?

Jump to this post

Would you post a link from the education center specifically on nutrition? The link you posted led me to the nutrition specialist service which did not appear to be free.

REPLY
Profile picture for kilkennyfarmwife @kilkennyfarmwife

I am stage 1 breast cancer and have been on Anastrozole since last august. I am 64 years old. I have a 9 percent chance of cancer returning if I am not on this medication. I am going off this drug based on the following. The side effects are destroying my quality of life. I am mean irritable, can’t sleep, my chest is tight, I have mucous in my nose, sore throat, headaches and brain fog. When I bring up the side effects the doctor always tells me they can give me more drugs to counter the side effects. They offered me anti depressants. Then it was Zometra for osteoporosis which can cause my teeth to fall out. And they will because I have thinning gums. It is just adding one drug after another drug and for what? Thirty years ago my 86 year old mother went to Mayo Clinic telling the doctors we have a history of osteoporosis in our family. The doctors put her on Fosomax for several years. She paid $350 a month for her medication. The result of this drug did MORE HARM and has made my mother osteoporosis so bad she breaks bones at any little fall. She has lost 7 inches on her height. She has broken her rib by putting on her seat belt. She has broken her back when laying down at a doctor office in her late 70s. She had to fuse her back together at Mayo. Every time she breaks her bones it is a trip to ER hospital and massive rehab with tons of pain. This Easter she fell while using a Walker and is now in hospital and rehab for broken bones! She has been in and out of hospitals because of her osteoporosis and is massive pain! She cries every day. Recently 7 doctors at St Cloud hospital looked at her trying to figure out what happened to my mother. Hell it was the damn drugs they gave my mother thirty years ago that did this to her.

I now follow a wholistic doctor. I have bought myself a Peloton and ride my bike every day. I go to Y and do weight bearing exercises. I have lost 30 lbs and eat healthy. None of this is ever talked about at Mayo while I battle breast cancer. It is drugs drugs drugs! We are in a profit driven sick care system. We pay the most for health care out of any other G-7 country and we have the lowest mortality rate. You need to be your own advocate for your health.

Jump to this post

I agree with you! No one in this process even mentions nutrition. I highly recommend
drjohnmcdougall.com for great info on nutrition and cancer.

REPLY
Profile picture for Colleen Young, Connect Director @colleenyoung

@kilkennyfarmwife,
As @auntieoakley mentioned, you may wish to contact Mayo Clinic’s Office of Patient Experience.
Mayo Clinic Office of Patient Experience
Phone: 844-544-0036 (toll free)
Email: opx@mayo.edu

Have you ever explored the webinar offerings of Mayo's Cancer Education Center? They've moved many of their classes about nutrition, exercise, stress, bone health, etc. online so that they are accessible whether you're at Mayo Clinic or back at home. Follow the Cancer Education blog and class listings here: https://connect.mayoclinic.org/blog/cancer-education-center/

@muradangie and @roch may have more tips of classes and services available to you as a Mayo Clinic breast patient. For example, did you see an oncology dietician/nutrition specialist? Did you know that this sevice exists?

Jump to this post

Our Cancer Education Center is open Monday-Friday 8-5 pm. If you have questions about any of our classes our Center's number is 507-266-9288.

REPLY
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