← Return to Aromatase Inhibitors: Did you decide to go on them or not?

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@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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Replies to "I am stage 1 breast cancer and have been on Anastrozole since last august. I am..."

While I agree with getting healthy to improve ones quality of life, and help a person to live a more productive life. It will not treat your cancer, or prevent another one.
I can feel how distressed you are about your mother and her current condition. I would be as well. Sadly not every drug works the same for everyone, and science changes and evolves all the time. The point of science and research is to continually do better.
No researcher goes into medicine to create a drug to ruin someone’s life, and most researchers do not work for pharmaceutical companies.
They work everyday in a lab in a university or medical center trying to come up with ways to help patients.
While I agree that not everyone needs every drug, it would be really sad if there were no drugs to offer the person who went to the doctor looking for help. A truly suffering person goes to the doctor looking for the fix that will cure the suffering. There isn’t always a perfect fix. Is it always a cost versus benefit equation using the best available information at the time.
If you are unhappy with your care at Mayo Clinic please contact patient services, @colleenyoung is always pretty quick with a link for this.

@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?

@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.

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

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 ;-).