CommunitiesHER2+Severe Pain and Side Effects from Anastrozole: Any Alternatives?

Severe Pain and Side Effects from Anastrozole: Any Alternatives?

LI

Community Member

10 months ago

I’ve been on anastrozole for about 2 years Lately I’ve been having been having very bad bone pain in my thigh, knee and back. Even sitting on a toilet is painful and lying in bed. I can’t Tylenol or anything for pain because my liver enzymes are high and being monitored with blood tests I never had high liver counts until I took this pill. I had 2 lumpectomies and chemo and radiation and was happy after that was over never knowing the pill makes you feel terrible. I know I have to take this pill because without it cancer might cone back. Has anyone have any better results with the other 2 pills in the same family as anastrozole Did anyone link there medical records to this site and if so do you get good ideas.

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16 comments
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accepted answer

Accepted Answer

Dealing with severe side effects from hormone therapy can be incredibly challenging, especially when pain management options are limited due to liver concerns. Many community members have shared experiences with switching between different aromatase inhibitors like letrozole and exemestane, as some people do find one more tolerable than others. It's definitely worth having a detailed conversation with your oncologist about the pain levels and liver enzyme changes, as they may have strategies to help manage these side effects or discuss alternative treatment approaches that could work better for your situation.

3+ patients found this helpful

RI

Community Member

6 months ago

I'm the husband of a wife that started taking anastrozole for hormone blocking today. The oncologist says it's given for 5 years. Linda, I feel for ya. My wife is so happy to be finished with surgery, chemo, and radiation. So we're both hoping that long list of side effects is just a list. If you figure out your dilemma I'll take note, just in case. Good luck and I hope you're cancer free and healthy for a very long time.

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LI

Community Member

6 months ago

I wish you and your wife the best. Everyone feels different on the meds but I know it’s very important to take these medicines so the cancer does not come back. It’s important to keep on moving and eat good food also

RI

Community Member

6 months ago

Yeah, we both changed our diet, Casey Means writes an awesome book if you haven't read it. We follow it to a T. My wife is doing everything she can in all aspects of health: of course a clean diet, exercising ( long walks) regularly, meditating, therapy, acupuncture, staying positive with help from friends and family, all sorts of massages, singing circles, reading and watching wholesome stuff, and laughing and loving through life with me. It's all built into our everyday existence. But her side effects try to bring her down, yet she perseveres. Keep well.

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RI

Community Member

6 months ago

I forgot to tell you the name of the book, "Good Energy", by Casey Means.

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SR

Community Member

6 months ago

I switched to exemestane and it made all the difference. Still a bit achy but not as bad. Try switching. Good luck!!

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LI

Community Member

6 months ago

Thank you 😊

MA

Community Member

6 months ago

It can also be from bone loss. Have you had your bone loss test or I guess it’s called bone density test ha ha

SS

Community Member

6 months ago

There’s a FB Group dedicated to Anastrazole side effects that I joined… lots of opinions there on what works and doesn’t from Patients like us. I’m starting this pill next week… ugh

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HG

Community Member

6 months ago

I tried taking letrozole on and off for a year and my body hated it, I was a complete couch potato because the fatigue was overwhelming. I finally told my oncologist. My quality of life stunk because of how bad the fatigue was, I asked if there was an alternative And she just responded with stop taking the drug. Of course it’s spread from my breast to the brain and I switch doctors and she put me on Exemestane, I had zero side effects. Perhaps if my first oncologist had done her job and switched me to this drug instead, maybe it wouldn’t have spread to the brain. 

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JM

Community Member

6 months ago

Oh my Holly G. I can't believe a dr told you to just stop. HeR 2+,Er + , PR + are difficult to keep at bay with the drugs available. I wish you the best

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HG

Community Member

6 months ago

When I was first diagnosed, my oncologist, never told me about this breast cancer being a spreader. It wasn’t until I found another oncologist, that’s when she told me that I should’ve been on something because of the spreading of this cancer. I must say I’m so Depressed about my first oncologist, the doctor was chosen for me and I wish I had done more homework. I probably wouldn’t be in this situation had I known how important taking the drug was to prevent it from spreading. What really has me furious is now I have to do chemo every three weeks forever and I’m on chemo drugs.

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JM

Community Member

6 months ago

I can't express how sorry I am this happened to you. The chemo is hard but with good care you should have quality in your life. Are they regularly accessing with pet scans or mri? A good oncologist will re evaluate drug treatments as you go. I still get scans every six months and see the oncologist every 3 months.

HG

Community Member

6 months ago

Thanks Janna🙏 I’m so impressed with my new oncologist, I get scanned every three months. An MRI, CT scan, echo. My old oncologist in three years never did any of those scans. My only regret is that I wasn’t more proactive, I just listened to my oncologist did what she said and in the end, I thought everything was good. This time around I google everything, drugs, treatments, trials… You name it I research it now. 

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LI

Community Member

6 months ago

Holly I am so sorry to hear about your cancer. Since I’ve been on outcomes for me I learned you have to be your own advocate. I’m glad you have a new doctor. Keep up your spirits and keep on moving around. My prayers are with you and everyone that’s going through this.

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JA

Community Member

6 months ago

I took anastrozole for 3 years. At my oncologist visit, I complained about joint pain. He said that is a common side effect after a few years. He switched me to another drug, but immediately, there were issues. He switched me to letrozol, which I am tolerating. I have neuropathy in my legs and feet. I use a walking stick, take pregablein, rub cbd lotion into my feet, and wear compression socks. Seems to help. Now, to get rid of the constant UTIs. But I am still here.

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CA

Community Member

2 months ago

Dealing with severe side effects from hormone therapy can be incredibly challenging, especially when pain management options are limited due to liver concerns. Many community members have shared experiences with switching between different aromatase inhibitors like letrozole and exemestane, as some people do find one more tolerable than others. It's definitely worth having a detailed conversation with your oncologist about the pain levels and liver enzyme changes, as they may have strategies to help manage these side effects or discuss alternative treatment approaches that could work better for your situation.

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