Concerned about the side effects of anastrozole

Posted by tinalove @tinalove, Jan 31, 2016

I completed all treatments for breast cancer but now I am supposed to take hormone blocker, named anastrozole. im concerned about the side effects. Has anyone here taken it and did anyone have hair loss?

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@reflector75

I am fully with you the way the possible side effects of theses AIs are underplayed. I am currently part of a research study in UK ( Roseta) looking at peoples experiences and compliance with treatment. I am emphasising in my feedback how the side effects some ( admittedly not all) women will experience are played down and the impact theses drugs can have on both mental health and physical function.

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I so agree with you. This is not one size fits all drug. I filed a report with the FDA (Federal Drug Association) and brought information to my oncologist including the CVS list of side effects. Can you believe I didn't even bother to read it when first prescribed it? It took one year for me to realize it was the drug causing all or many issues ( left leg just letting go causing a bad fall and broken shoulder, eye tooth shattering, etc.) This drug does save lives, I know women who haven't had a problem but much more help is needed for those of us who try to tell our doctors we are having problems. I am so grateful for this board. It was a godsend to me. When I found it I felt heard and that I wasn't imagining my problems. I was not alone. I hope you are well and feeling much better, take care

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@nanakathy1

so hope you are feeling better. I also had and have terrible side effects and six months in still have some. I asked about side effects and was told "well, maybe a few hot flashes" ya right!
more must be done to spread the word and help all women make good and safe choices and stop the suffering.

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I am fully with you the way the possible side effects of theses AIs are underplayed. I am currently part of a research study in UK ( Roseta) looking at peoples experiences and compliance with treatment. I am emphasising in my feedback how the side effects some ( admittedly not all) women will experience are played down and the impact theses drugs can have on both mental health and physical function.

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@einnoc

Happy to hear that you are having few side effects.
I had every side effect in the book and then my left knee blew out, leading to injections of anti-inflammatory drugs (32 ml of one; 6 ml of Durolane; Tramadol for pain) and I could not walk for over 6 months. After the meniscus-tear-like symptoms abated, my left knee (which was injured in a bicycling accident in 1997) did not return to "normal." I have to brace it to walk at all, and it doesn't appear that it is ever going to be "right" again. The thing is, I had been in a nationwide study (the MOST study) of those with a family history of arthritis and/or previously damaged joints from 1997 to 2020. I made numerous trips to Iowa City, Iowa to the University of Iowa Hospitals and Clinics and was X-rayed (hips, knees) and had MRIs of my left knee each and every time, to track the disintegration of my/our fragile joints. With that history, I should never have been given any of the A.I. drugs and told the only side effect was "a little stiffness in your hands and fingers when you wake up first thing in the morning, and it goes away when you quit taking it." Because I am also a Type II diabetic I also know that my bone density declined from -1.4T to -2.4T during this time, which is from osteopaenia to osteoporosis, which gives me a whole new set of problems to deal with. It's not enough to have to worry about my onco score of 29 and diabetes and fibromyalgia, now I get to debate whether or not to take biphosphanates for bone loss/osteoporosis. I'm in the midst of $10 grand worth of dental work right now from 2 teeth simply splitting below the gumline, and my dental insurance tops out at $1500 annually. So, while I am happy to hear that others are dodging the Anastrozole bullet, it got me right where I live, and taking Anastrozole has caused me a great deal of pain, suffering and money. A good doctor would have told me to avoid A.I. drugs and possibly recommended Tamoxifen, which does not "inflame" joints and attack your bone density to quite the extent that Anastrozole, Laetrozole and Exemestane can, Obviously, my oncologist in a smallish rural area was not great, not informed, and not helpful. He only saw me 2 times in 8 months and he still denies that the side effects I mention above had anything to do with taking Anastrozole from Feb 1, 2022 until my knee blew out (Sept. 15, 2022). I've changed doctors, but the damage is done and appears to be irreversible.

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so hope you are feeling better. I also had and have terrible side effects and six months in still have some. I asked about side effects and was told "well, maybe a few hot flashes" ya right!
more must be done to spread the word and help all women make good and safe choices and stop the suffering.

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I've completed breast surgery as well and I have been taking anastrazole for about 7 weeks and I have pelvic pain ,joint pain and painful sex..is anyone else experiencing these symptoms?

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@otas

Yes I experienced hair loss after 6 months of taking Anastrozole. It’s now almost 2 years on it and still experiencing hair loss.
What can I do to stop hair loss?
Thanks

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My oncologist suggested Minoxidil - topical. I am using it and it has been pretty good - I can see new hair growth.

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Yes I experienced hair loss after 6 months of taking Anastrozole. It’s now almost 2 years on it and still experiencing hair loss.
What can I do to stop hair loss?
Thanks

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@turtle4115

I'm 74 and am waiting to start Radiation for Stage 1 Invasive Ductal Carcinoma Estrogen & Progesterone +. After my radiation I'm supposed to start Anastrazole and am concerned about the side effects. My Medical Oncologist eased my anxiety. She told me to try it and if I experience side effects we have two other medications to try. If I can't tolerate any of them I'll have done what I can and just keep up with my follow ups. I figure the stress I was putting on myself is worse for my health than not taking the Anastrazole. I'm trying to keep things in perspective, with each passing year something else could kill me before the Cancer. But I don't want to be in constant pain or end up on so many medications that I can't live my life.

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I'm 68 yrs old. Stage 0-1 HR Positive- Ductal. After 5 sessions of targeted radiation, I was put on Anastrazole. My system did not work well with this medication. Joint pain and severe abdominal and back pain that put me in bed. My reoccurrence was 5% so I decided after only 6 months to not take any of the meds. Living my best life. These are difficult decisions. I wish you the very best.

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If your recurrence risk is 10% then taking Anastrozole will reduce that risk to 5%; a 50% reduction.

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@nanthony723

I took Anastrozole for 14 months following a lumpectomy and radiation for Stage 1 lobular breast cancer. The side effects didn't really start until 1 year in. At that point, I started to experience depression, weight gain, vaginal dryness, and worst of all, pain in my fingers and hips. After 14 months, I told my oncologist that I had decided to go off of it. She offered to prescribe an anti depressant, but I refused. It's been 8 months since I quit taking it, but I feel soo much better now. I have a friend with the same type of cancer, and she also started to experience unbearable symptoms starting at about one year. She had severe swelling in one of her arms and her vision also suffered from pressure on her eyeballs. She has also quit taking it. I am anxious every time I go in for a follow-up, but I know that I would worry even if I were taking the med as it doesn't guarantee that the cancer won't recurr. It just reduces the risk by about 50%. I hope my experience helps you with your future decisions. Hugs.

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May I ask about your statement anastrozole reduces the reoccurance of cancer by 50%? I was under the impression it was 1-3%. I ask because I have the presription but am strongly leaning towards not taking it. Stage 1 also, had mastectomy and chemo, herceptin for HER+. Currently feel like my body is still recovering, not wanting to go through any more. But obviously don't want cancer back! Can anyone else share what they were told about reoccurance percentages regarding anastrozole? Thanks to everyone.

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I'm 74 and am waiting to start Radiation for Stage 1 Invasive Ductal Carcinoma Estrogen & Progesterone +. After my radiation I'm supposed to start Anastrazole and am concerned about the side effects. My Medical Oncologist eased my anxiety. She told me to try it and if I experience side effects we have two other medications to try. If I can't tolerate any of them I'll have done what I can and just keep up with my follow ups. I figure the stress I was putting on myself is worse for my health than not taking the Anastrazole. I'm trying to keep things in perspective, with each passing year something else could kill me before the Cancer. But I don't want to be in constant pain or end up on so many medications that I can't live my life.

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