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Completed 5 years of anastrozole. Withdrawal symptoms? Side effects?
Monday, July 23rd, after consulting with Dr. Loprinzi, we decided to have me stop taking anastrozole. (Arimidex). It has been 5 years since I started the drug after breast cancer surgery and radiation. Has anyone stopped this drug and had any withdrawal symptoms? The nurse from Blue Group sent me an email today saying that there are no withdrawal symptoms after stopping this drug. Soooooooooooooo, is this all in my head? Definitely having some type of withdrawal.
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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.
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3 ReactionsI have taken anastrozole for 5 years. Over that time I have experienced joint pain, especially in my knees. This winter my pain got worse and the way you describe what you are experiencing is exactly how I would describe my pains. I assumed it was related to other things. I have now stopped taking anastrozole and the pain around my knees is becoming unbearable. The pain comes from around the knee and there is stiffness in the joint and yes it does seem to be in the tendons and moves around not always in the same place. It is very uncomfortable when I try to sleep at night. Hopefully this is withdrawal symptoms and will go away in time. Thank you for sharing what you are going through as I hadn't made the association with the pain to ceasing the medication until I read yours and other similar stories
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1 ReactionI'm no expert on anastrozole and others who know more will opine, but I would, want to see an orthopedic or related specialist just in case there is something that be addressed and prevent further issues. 'Unbearable pain' is a signal needing attention in my book...I mean there are only a few ways our bodies can get our attention, fever and pain being it's favorites ;‐)
For what it's worth, I took anastrozole for 5 weeks and developed a first-ever limp/pain in my leg that went away when I quit anastrozole then returned within two days when I resumed it. It's now been two months since I took it and the limp/pain is slowly fading buy not yet gone entirely. I don't know what the mechanism is that causes the arthralgia and hope it goes away 100%. I had had a recent DEXA scan so we can rule out bone damage at least.
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2 ReactionsAll of these comments make my heart ache for each of us who must try to live some kind of quality life, in spite of taking these drugs to help prevent recurrence of breast cancer. How I wish to see the day that better and more tolerable treatments are available to breast cancer survivors!
But on a more positive note, as a 68 year old woman, I’m also grateful for what we do have to help us to live. It’s not long ago that breast cancer killed many more women prior to these nasty drugs were widely available. I’ve been on Anastrozole, Tomoxifin, and have now been on Exemestane for two years. It’s been better than the others, but still causes me challenges.
All of these medications have side effects that can absolutely dreadful!! For me the worst side effect has been some loss of cognitive function. I’ve read numerous articles about how estrogen effects our ability to think clearly. For me any of the symptoms from these drugs are just like going through menopause all over again. But in taking these drugs the symptoms are more pronounced and more bothersome than menopause was : especially knowing that I am taking a drug to save my life, but that the drug is also causing the quality of my life to be less than it could be without it. It sucks!!!
Thank you to all of you here on this message board! It’s a true relief to be able to connect to other women who really ‘get it’! ❤️
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7 ReactionsI read an article a few months ago, I think in the Atlantic but can't swear to it, by a writer who got breast cancer when her two sons were under the age of 5. She wrote about coming upon her journal where she'd written about the terror of leaving these sweet children motherless and the helplessness she felt.
Here's the point, she came upon the journal while searching in the attic for her one son's baby book so she could share it with his wife as she was pregnant with their first child.
She wrote about the realization that she'd lived with cancer, and some recurrences, for over 20 years, during which time she and her husband raised two wonderful young men. The family albums showed all the usual photos of kids playing, dogs chasing balls into a lake and all the usual milestones of life. She feared, when she was first diagnosed, leaving two sad little boys whose later lives would always be shadowed by that sadness but the photos showed happy active kids. Cancer became 'just another part' of her life, but not her life. Or her death either, at least so far.
A lot of the article's readers commented that they'd had the same experience. It wasn't easy, and cancer is a rogue bad guy, and the treatments uncomfortable, and yet can become just an inconvenient part of life.
I read the article before receiving a surprise Bad News Biopsy and lumpectomy last fall and the mere idea of living with cancer(s) for over 20 years shocked me. But I see here that people can in fact do just that thanks to the evolving science. We'd rather science finds the key to prevention but saving lives is a big accomplishment. And what science learns from us can save the lives of young girls who might someday face even better odds.
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2 ReactionsAha, here's the article I mentioned above. It was the Atlantic, proving my memory is working better than my 'only healthful foods diet' so far.
I’LL TELL YOU THE SECRET OF CANCER
It’s been almost 20 years since my diagnosis, and I’ve learned quite a bit.
By Caitlin Flanagan
https://www.theatlantic.com/health/archive/2021/08/caitlin-flanagan-secret-of-surviving-cancer/619844/
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.]
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 know I saw a comment about proton therapy. There is a very large proton therapy institute near me-my surgeon strongly poo-pooed this treatment for breast cancer. Does anyone have experience with this?
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