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Completed 5 years of anastrozole. Withdrawal symptoms? Side effects?
Breast Cancer | Last Active: Jun 21 8:58am | Replies (273)Comment receiving replies
I have just completed 5 years taking anastrozole for stage 2b breast cancer. I had surgery, chemo, and radiation in 2017 I then was prescribed anastrozole for 5 years. I also was prescribed an IV infusion of zoldronic acid every 6 months to counter act the calcium loss caused by the anastrozole. Both of these medications have caused side effects like joint pain, terrible hot flashes, hair thinning and loss. Whenever the doctors asked about side effects of these medications I would tell them, but they seemed unconcerned and just brushed it aside.
My oncologist changed 3 times during the last 5 years. My last 2 oncologists I never met because of covid restrictions so we just did phone appointments. The last time I spoke to my second oncologist he mentioned that perhaps I should continue the anastrozole for 10 years. I was a bit upset when he mentioned this, mostly because I was tired of terrible hair and joint pain. This year I was assigned a new oncologist and never having met me she put all of my information into her computer program and quoted me the stats and benefits of taking anastrozole over 5 years. Turns out that the benefits of taking anastrozole over all the other treatments I went through are very minimal, something like a small percentage of increased survival rate over a ten year period. We weighed the benefits over the side effects and decided to stop the medication.
I am 3 three weeks into not taking anastrozole and have been experiencing terrible knee pain. I did not make the association with withdrawal symptoms from my medication until I started researching this and came upon this discussion group. I am praying that these pains will not be long term as I am an active person hitting 70 soon and do not want to be incapacitated the rest of my life.
My new oncologist also told me that my treatment included 6 rounds of zoldronic acid. To date I have received 9 rounds. Zoldronic acid also has side effects like hair loss and joint pain. After my last treatment in December my joints, especially my knees were terribly sore and stiff for 2 weeks after the treatment.
I have decided not to follow through with my next scheduled treatment of zoldronic acid.
It seems like a never ending cycle with prescriptions, one is given and another is given to counteract the side effects of the first one and then another given to counteract the side effects of that one.
Thank you to those of you in this discussion group, without hearing your experiences I may have pursued unnecessary treatment for my knee pain. As it is I shall wait to see if with the withdrawal of the anastrozole it subsides before doing anything more about it.
Replies to "I have just completed 5 years taking anastrozole for stage 2b breast cancer. I had surgery,..."
Welcome @rjc. I’m relieved to hear that you are in the care of an oncologist with whom you seem to have good rapport and who takes the time to discuss everything in the detail you want to make decisions right for you.
I'm no expert on osteoporosis drugs and others with more experience will opine here, but I've researched a lot of them. Can you get a second opinion on the 4.5 years on zoldronic acid and whether you can segue into another? Have DEXA scans shown that it's been of value so far? There are several topics addressed on the osteoporosis boards on Mayo Connect and a lot of information shared about peoples' experiences with the various options that may be helpful with this. I certainly understand the wariness about what I think of as mission creep, wherein drug A causes some side effect requiring drug B ad nauseum but you want to protect any gains you've made with the anti-resorptive IVs while your body adjusts to the new anastrozole-free normal.
I am SO glad you have a new oncologist. I cannot believe how lucky I am that mine insisted that I see him through Covid. No letting up there. FYI—I was recently at the hand doctor for tendinitis and asked him if he was familiar with the bone loss medications since in my head I was thinking it might be related. He said no, he’s just a mechanic! That the best doctor for my bones is my endocrinologist which they also assigned me at the beginning of this journey. She is my rock at this point besides my onc.
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I have a male friend who was nearly permanently disabled by a Lupron injections, given after radiation for prostate cancer. He thought it was the radiation but he'd breezed through that so I researched the Lupron, which left many men with severe muscle loss that they never were able to reverse.
Here's the point.... I went with him to his oncologist and, it turns out, that the statistics suggested that Luporon would give him a 1- 2% reduction in the likelihood of the cancer recurring within 5 years. He never had another Lupron injection and it took over a year before his legs recovered strength. He's still angry that the oncologist didn't fully inform him of the known adverse effects and the actual risk reduction payoff. He feels that it would have affected his decision to take the 6-month injection. [That was over 10 years ago and his PSA has remained within safe limits. So the external beam radiation, called Cyberknife, seems to have done its job though.]