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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Profile picture for einnoc @einnoc

Hopeful, I have refrained from publicizing the oncologist's name, although, when asked in private, I do not hesitate to name names. At the outset of my journey, I had NO family history (or friends) with b.c and thought that his dismissive attitude towards the ordering of an oncotype was based on the fact that, on the surface, my presentation seemed relatively positive: small tumor (11 mm) caught early, no spread, good margins, 95% estrogen positive. I did not know that the onco score would be used not just to plan treatment but also would give a % of recurrence rate for later, which became my chief concern as time went by. I have blamed myself for not insisting on the oncotype, but I am a child of the forties and an English teacher does not claim superiority over the wisdom and training of an oncologist in the world I grew up in. I didn't know (then) that the Modern Medical Mantra has become YOYO (You're On Your Own) It was only after all of my treatment (surgery, radiation, one full year of pills) that I began to study up.

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@einnoc , my new oncologist/surgeon did my Oncotype test probably a year after my mastectomy. He said they keep the tissue for 7 years. He requested it. Maybe you can still have it done.

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Profile picture for bloncape @bloncape

I was on anastrozole for 2 1/2 months. I had SO many side effects. I think the worst 5 were depression, brain fog, hair loss, daily headaches and constipation.
I declined taking exemestane because aromatase inhibitors would only decrease my chances of recurrence by 5 or 6%. I was told that the side effects can be treated with more drugs, but I was concerned about the potential of more drugs causing even more side effects and an even poorer quality of life. I was not convinced that taking numerous drugs at age 70 would increase my overall survival.
These decisions are not made easily. I truly understand that the choices are even harder for breast cancer patients with higher chances of recurrence or at a different stage of life.
I wish you all well and peace with your decisions.

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Exemestane Reduces Breast Cancer Risk in High-Risk Postmenopausal Women
Adapted from the NCI Cancer Bulletin.

The list of drugs that have been shown to reduce a woman's chance of developing breast cancer can now be expanded from two to three. Clinical trial results presented at the 2011 American Society of Clinical Oncology (ASCO) annual meeting showed that the aromatase inhibitor exemestane (Aromasin®)—commonly used to treat early and advanced-stage breast cancer—substantially reduced the risk of invasive breast cancer in postmenopausal women at high risk of developing the disease.

The findings were also published online June 4, 2011, in the New England Journal of Medicine (NEJM).

At 3 years of follow-up, women who took exemestane were 65 percent less likely than women who took a placebo to develop breast cancer. This is the largest reduction in risk seen in any of the four large breast cancer prevention trials that have been conducted to date. In previous trials, daily use of tamoxifen or raloxifene reduced breast cancer risk by approximately 50 percent and 38 percent, respectively, after 5 years of follow-up; both drugs were eventually approved by the Food and Drug Administration (FDA) to reduce breast cancer risk.

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You’re correct on the manufacturer. Look into it. I have high positive on both. It seems to me that if you an extremely high in both. Your side effects on anastrozole isn’t that bad. In had a rough few months in the beginning mood swings were no joke. I wasn’t myself. Constantly yelling at everyone. That’s not me at all. After a few months I felt better kinda back to myself. Still have some mood swings problems nothing I can’t handle. Feeling fatigued at night after taking my meds. Hot flashes happen at night not a big deal. What is a big deal is no sex drive. I’m working through it. Glad my husband understands. Hopefully on this for a few more years. Started Aug of 2022. They say 5-7 years. Hope all goes smoothly in the coming years. Cancer free for years to come. I was 58 with estrogen positive her2 negative with 1 lymph positive.
Does anyone have the same ?

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I have just finished 5 years of Anastrozle in March. Strange thing was I didn’t get the debilitating side effects in the first 2 to 3 years as I have suffered during the last 18 months. Years 2 and 3 were during Covid whether it was because I rested more. Pain was in feet and ankles, knees, hips, shoulders, hands, wrists and ribs. I rarely left the house. About the time the side effects started I was getting the prescription from a different pharmacy. For the first few years the script was Arimidex and when I changed it was just labelled Anastrozle. I have done some investigating and there are some theories that the “fillers” can be to blame. Has anyone heard of this?

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Profile picture for katrina123 @katrina123

einnoc...Oh my Gosh, you have been through so much. I am so sorry. It's very concerning that doctors can get by with such unkind, and dangerous behavior. And I think that it's difficult to speak out to a doctor because it could be noted on your health record and then other doctors could be leary of you.

I don't know yet if my oncologist will put me on exemestane but after what you have said I am really concerned. I have had 3 knee surgeries, a wrist surgery, a hip surgery, a finger joint surgery and a L3 fracture so if this drug inflames previously injured joints, I will be in for it. Hopefully, I will be one of the lucky ones that can tolerate it if my doctor wants me to try it.

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Tamoxifen will not "inflame" the joints as the A.I. drugs do. And I AM "old," as my doctor so tactfully pointed out, With any luck, we will both get even "older." My mother---a 4-shots-a-day diabetic---lived to be 96 with no dementia and played bridge until almost the day she died. (She once flew to Hawaii to play in a tournament that Omar Sharif was playing in). I always figured I'd get diabetes, so I began watching out for that a long time ago, but the b.c. cancer diagnosis came from out of left field and left me totally unprepared. Like my mother, I am a fighter, and I won't go down without a fight, for sure. I feel normal and fine right now and, since I stopped taking all pills to "protect" me my energy levels have returned and I have recently done the Chicago International Film Festival, Nashville, Sundance, and, just recently, SXSW. I filed 34 different reviews from Austin in 8 days, attending 3 movies a day and writing until (sometimes) 4 movies a day. (I enjoyed telling my friends that I might get to meet Ryan Gosling on March 10th if I got the Red Carpet for that one) Not being able to stand (or walk) is not something that I can live with, and the Anastrozole definitely put me in a world of hurt in so many ways. Just for the World Premiere of "Stormy" (the documentary now showing on Paramount Plus, I think, I had to stand from 3:15 until 5:30 p.m. waiting for her to show up. I post on my own blog (WeeklyWilson) and on TheMovieBlog and have been reviewing film non-stop since 1972. I have no intention of letting cancer stop that, but it sure put a crimp in my style last year when I could neither stand nor walk.

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Profile picture for windyshores @windyshores

@einnoc What are you putting in your coffee ?! :einnoc What are you putting in your coffee ?! 🙂

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(lol)
Collagen. I order(ed) it from Amazon. I asked my oncologist if it was permitted and he had nothing much against it. I've read both "pro" and "con" but it dissolves and is tasteless and it certainly can't be any worse for me than the results of the wonderful adjuvant therapy drugs (i.e., Anastrozole and Tamoxifen). I'll know more about the doubling-up of my intake of calcium stuff (and, yes, I ordered some of the plant-kind capsules when someone said they were superior to dairy-originated calcium) and whether it has done me any good when I have the Dexa bone scan in May, as soon as we get back from 2 weeks in Cancun, where I am now. (Picture include my daughter with my twin granddaughters and me in Irish mode with daughter.)

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Joint pain, fatigue, hair loss, dizziness. If I work out the joint pain is better. The fatigue is so bad around lunch time I have to nap. I'm having my thyroid and cortisol levels checked to see if it's that or Anastrozole.

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@einnoc What are you putting in your coffee ?! :einnoc What are you putting in your coffee ?! 🙂

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Profile picture for windyshores @windyshores

It is a known fact that aromatase inhibitors like anastrazole cause bone loss.

Menopause causes bone loss through the loss of estrogen. Anastrazole works by reducing estrogen further, below detectable levels.

Were you not put on a bisphosphonate during anastrazole?

Your scores weren't osteoporosis yet, as you know, and they may be borderline now, which can sometimes, for some people, mean no meds yet, but ask an endocrinologist.

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Since I am a diagnosed Type II diabetic, I have been doctoring with an endocrinologist (Texas Endocrine Center) since 2017. I was 7.2 (A1C) and weighed 220 lbs. when I began with them. I am now 5.4 A1C and weigh 180 (and still trying to lose more weight.) I am 78 years old and 5' 2" (shrunk from 5' 2 and 3/4") and I joined a gym, primarily to swim in their heated pool. Unfortunately, the chlorine in the pool is so strong that I can only swim for 30 minutes before I get so dizzy that I fear I will pass out!

I have taken Ozempic AND Mounjaro and seem to have "plateaued" at around 180, which is way off from the insurance charts for people my age and height, which, last time I looked, said 147 lbs. I asked them about my bone density scores, since I knew I had osteopaenia going in. The first ones were obtained thanks to a good OB/GYN who had me get one at 2 year intervals, beginning in 2017.

Last trip in to the endocrinologist she did prescribe something, which, after I read up on it, I did not take. (A pill) I have now had 2 teeth split after routine cleanings. One required a root canal and a crown. That happened during the pandemic in 2020 before my 2021 b.c. diagnosis on Dec. 7, 2021. The second tooth split after cleaning on Nov. 16, 2023. I am in the midst of $12,000 of dental work right now, including a dental implant (#4 tooth), a crown on the tooth next to it, and a new filling under an old filling on a third tooth. I had dental insurance, which chipped in $1,500 for my "annual benefit." I will go in for the "twist test" on April 23 and, if I pass that, the dental implant will be installed. (In the meantime, I have not been able to chew on the right side of my head since November!). When I went to the endodontist (who is a doll!) he said I didn't need a root canal after all ($2,600 if I had), which was good news. He then sent me to "the best oral surgeon in Austin" and we had a very lengthy debate about whether or not I could even have a dental implant. The key thing seemed to be whether I had or had not taken ANY biophosphanates. Although I had filled the prescription, as requested by the Austin Endocrinology people, I never took any of them because I read up on them and it sounded like---given my score(s) then, which were close to osteoporosis but not yet there---I should maybe wait and see. I did, and I'm glad, or I could not have had the dental implant I need(ed) and, with the tooth immediately next to #4 (upper right) needing a crown, bridging was not a very viable option. I am a child of the 40s. I have a mouth full of amalgam fillings, which weaken enamel. Then I was put on Anastrozole for 7 months and my knee blew out and, possibly, it affected my jaw and teeth, as well. I am now taking lots of calcium (morning and night with the K needed) and I've been putting that stuff in my coffee daily that might help build bone---who knows? I also have done extensive reading on the inaccuracies of bone density exams. It seems to depend a lot on what machine is used and exactly how the patient is laid out and whether the patient moves and a whole bunch of other things. All I can say is that, thank God I didn't just swallow that biophosphanate pill when I paid for it and picked it up, or I'd be gumming food without an upper molar from now until the day I die.

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Profile picture for rozv @rozv

I was on anastozole for 5 months and experienced severe and constant back and joint pain, insomnia, brain fog, fatigue, trigger finger and dizziness...but no hair loss. I had to take pain meds, sleep with heating pads on my knees and back to alleviate the pain, was napping during the day due to the pain and insomnia and my quality of life suffered. I've had kidney stones and gave birth to a 9 lb baby with no medications so I am not a wimp...the joint pain was severe with the anastrozole. I was on Tamoxifen 16 yrs ago with my first breast cancer and the anastrozole side effects were more harsh than the Tamoxifen. It impacted my quality of life and my oncologist switched me to Exemestane.. with Exemestane the joint pain was gone completely within the first week as well as the insomnia, brain fog, trigger finger and dizziness. I've had some hair shedding but am back to enjoying life. After my experience I would say Hair loss is the least of ones worries with anastrozole!

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Rozv, your experiences on Anastrozole mirror my own. I also tried Tamoxifen, and can attest that it is easier to tolerate than Anastrozole, but when I was told I HAD to step up my intake from 10 mg. to 20. mg., things went South for me. I was on 10 mg. from April 23, 2023 until June 23, 2023. I had told my Texas oncologist that I was only going to take 10 mg. (not 20) and the reason was the Italian Women's Study of 700 Italian women who took a reduced dosage. I actually was only taking the 10 mg. every other day, so my total weekly consumption was 40 mg. On this dosage I experienced dryness and a constant urge to urinate. Nothing felt normal from the waist down, but I did not have the extreme fatigue or the UTIs that I experienced once I moved up from the 40 mg. a week to 140 a week. I was told by my Texas doctor's office that my faith in the Italian Women's Study was misplaced, because I was comparing apples to oranges in that their tumors were "in situ" and mine had broken through. Therefore, I agreed to step up to 20 mg. daily and that was NOT a good idea for me. I immediately had EXTREME fatigue. I could only be up for 3 hours at a stretch. I began having what felt like UTI infections and they were not able to be quelled by Amoxicillin or another strong drug prescribed by my physician. (I also tried something OTC that did nothing but turn my pee orange). This started before New Year's Eve and, after 10 days of this constant burning and itching and urinating I was headed to the convenient care when it dawned on me that I should probably call, instead, the OB/GYN my oncologist had made me get an appointment with, to keep tabs on the possibility of a thickening of the uterus (uterine cancer symptom) from Tamoxifen. I had been on her appointment calendar for 9 months. She refused to see me and I was reduced to tears, while driving to the convenient care facility. Her scheduling person called me back and told me to call my oncologist, which I did. He had me drive to another town and leave a urine specimen and that was when and how I got the second strong antibiotic. The 2 strong antibiotics then turned into a fungal infection, which also required medication and an office visit. I quit taking everything on Aug. 30, 2023. Am I concerned that I might have a recurrence since my onco score was 29. Of course, but I can't say that having non-stop UTI infections is a good trade-off, since I have a good friend who died from one that went septic. (As did the former Charlie's Angels star who died at 65 from one.https://www.womenshealthmag.com/health/a35155137/actress-tanya-roberts-death-urinary-tract-infection/).

So, my choices are: to take Anastrozole and be wheelchair bound and suffer agonizing joint pain OR risk endometrial cancer or a blood clot or sepsis, as described above.

When you need "protection" from the "protection" it is time to take stock and analyze the risks versus the benefits, which is what I have done at the ripe old age of 78.

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