Off Anastrozole and Letrozole after a year

Posted by flowergal @flowergal, Feb 14, 2025

The joint problems caused by these drugs made me crippled. My knees could not support me. I stopped them two months ago and the trigger finger stopped snapping forward, but the knees are still painful. I'm in PT to make them stronger but am wondering if they will ever be ok again?

Other symptoms are slow down. Also it made osteopena change to osteoporosis, so now need treatment for that.

Anyone else "recover" from these drugs and get their joints functional again?

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Profile picture for kpederso @kpederso

Hello, may I ask if that 8% number is a recurrence score, & do you know what your distant recurrence score is? All AI's it tried were not worth the pain, so my ONO thought to order an Oncotypre DX Breast recurrence report. It was determined that I too, could stop all the drugs.
My recurrence score is 13, and my distant score (risk at 9 years) is 4. I was HER negative. After taking these drugs for six months and stopping them for about six months, my knees are still hurting. You are a wise woman.

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@kpederso I also had an oncotype test & my risk of distant recurrance was 7% WITH endocrine therapy (tamoxifen, A.I. drugs, etc). (No chemo recommended.) I am taking 10 mg of tamoxifen. I wasn't aware that the test gave a distant recurrance risk score that didn't include taking one of the hormone blockers.

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I was diagnosed with invasive DCIS Stage 1 ER+ breast cancer. My surgeon and I agreed for a lumpectomy, no lymph nodes removed. surgeon and radiation oncologist recommended 4 weeks of radiation. After further review by the radiation team, my radiation was reduced to 3 weeks. Now the medical oncologist is recommending 5 years of Anastrozole and possible Zometa infusions to strengthen bones. After researching and reading reviews of people on an AI my decision is to not risk the horrible side effects of bone loss. My risk of recurrence is 6%. I am an active, otherwise very healthy 71 year old, exercise regularly, excellent diet. I’ve had carpal tunnel surgery and 2 trigger finger surgeries ( hereditary)why would I want to take a medication that can cause this again and more bone pain? After reading comments on this site, I feel good about my decision based on my cancer diagnosis. Thinking of all breast cancer survivors💕

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Profile picture for jmab @jmab

@kpederso I also had an oncotype test & my risk of distant recurrance was 7% WITH endocrine therapy (tamoxifen, A.I. drugs, etc). (No chemo recommended.) I am taking 10 mg of tamoxifen. I wasn't aware that the test gave a distant recurrance risk score that didn't include taking one of the hormone blockers.

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Can I ask if you had radiation? My medical oncologist stated 1 mg of Anastrozole is standard.

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Profile picture for kuklanow @kuklanow

Can I ask if you had radiation? My medical oncologist stated 1 mg of Anastrozole is standard.

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@kuklanow I know, we all have such different experiences. I had the 5-day radiation treatment & I am taking 10 mg (half-dose) of Tamoxifen to protect my bones.

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