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 flowergal @flowergal

It is so complicated! I took have osteopenia and on Anastrozole. I had Prolia shots in 2019 and massive dental work in early 2021. Luckily everything went well.
I had been in fosamax in earlier years, but my jaw bone was good.
So many things we have to balance now that I never worried about before. I understand what you are saying.
Right now for me it's fatigue. Really struggling.

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Hi Flowergal, My breast cancer was in 1 breast, Ductal Carcinoma 1.5 Cent. small mass. I have been taking anastrozole for 2 years now and the last 6 months have been having some very uncomfortable symptoms. Bone and joints very achy most of the time, nights are worse. Very tired (I teach elementary), hot flashes occasionally. I had 20 days consecutive radiation post surgery. Then this hormone therapy to decrease estrogen in blood stream. I am spending the weekend researching info to help me make a decision to continue, take a break, or stop. The other meds, seem to have greater risks. Oh, I have osteoporosis. Dr. wants me to take the reclast infusion once per year, I've had one does, then a tooth split in 1/2, had to put off any more reclast tx. Yes, this is complicated. I see oncologist Mon. Not sure how it will go.

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Question, has anyone experienced high potassium levels and or kidney disease as a side effect of anastrozole?

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Profile picture for rococo325 @rococo325

I thought Tamoxifen is prescribed for premeopause women...

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It is, but for those post menopausal women that can’t tolerate AI’s FICA can prescribe Tamoxifen as an alternative. It’s not as effective though.

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Profile picture for einnoc @einnoc

Thanks, Flowergal. I review at WeeklyWilson.com and also on TheMovieBlog.com,
I've been reviewing film (a sidelight, as I taught and had "real" jobs, too) since 1970, first starting out in the real newspaper (Quad City Times, Davenport, Iowa.) In fact, I compiled my reviews from that paper in a book entitled "It Came from the 70s: From The Godfather to Apocalypse Now." (available on Amazon with 10 trivia questions per film, with the answers upside-down on the next page.)
I have covered the Chicago International Film Festival for over 20 years and have done SXSW since about 2015 and also, over the years, have been Press at Sundance and the Vancouver Film Festival and in Denver, Nashville, and others (Windy City Film Festival, but that time I was a finalist in the screenplay competition.) The injury to my left knee was devastating for SXSW last year, but they were very kind to me, and, somehow, I made it through the continuous standing that occurs when you are waiting for the "stars" to show up. I hope to be able to continue reviewing, as I have for 52 straight years, for the forseeable future. I also write "long" on occasion and those works (30+) are up on ConnieCWilson.com. To say that I found being in a wheelchair for over half a year inconvenient is putting it mildly. Would any of us want to be unable to take ourselves to the bathroom? Is that the price I must pay to "protect" myself against a recurrence---being semi-crippled? It's not even a guarantee of protection and it's too steep a price to pay. As for the Tamoxifen, my good friend Sue Ann Raymond (now 84) had her lumpectomy in 2013 and was put on Tamoxifen and described how she could not even get out of bed! Sue Ann is an Episcopalian minister in small-town Iowa and she simply pushed the pills back on the oncologist's desk and said, "It's in God's hands." Since then, she has shepherded her flock, jumped out of an airplane to raise money for a new roof, and been approached to run for Mayor. None of those things would have been possible if she had remained on Tamoxifen back in 2013 when it was prescribed to "protect" her. It really is a "risks versus benefits" thing, and, while I am justifiably apprehensive, I practice what I call Eternal Vigilance and try to push thoughts of my demise to the back corners of my over-active imagination. I'm in Austin (Tx) right now, planning our annual trek back to Illinois to avoid the heat of summer and thinking about "writing long" again with a 4th book in my 3-book series "The Color of Evil." I'll be attending the Rolling Stones concert at Soldier Field on June 27 and, in the 3 days after that, the Sundance films are being shown in Chicago for 3 days (although I reviewed most of the winners on my WeeklyWilson blog already.) As I have written elsewhere, my mother---a 4-shots-a-day diabetic---lived to be almost 96 and played bridge ALL the time (once flying to Hawaii to play in a tournament that Omar Sharif played in!). I'm not about to quit living life, nor am I willing to suffer the tortures of the damned on the off chance that these toxic substances might "protect" me somehow. I'm going to be trying to find out about any other clinical trials of the sort explained here:
https://www.icr.ac.uk/news-archive/research-uncovers-how-to-target-sleeping-breast-cancer-cells-and-prevent-relapse

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You March on to your own best and stay healthy!
I am a senior who is also going to see the Rolling Stones with my 71 yo husband.
I am staying on the drug for now, however may go to every other day and see if that helps. I'm determined to continue to take care of my grandchildren!
Safe travels.

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Thanks, Flowergal. I review at WeeklyWilson.com and also on TheMovieBlog.com,
I've been reviewing film (a sidelight, as I taught and had "real" jobs, too) since 1970, first starting out in the real newspaper (Quad City Times, Davenport, Iowa.) In fact, I compiled my reviews from that paper in a book entitled "It Came from the 70s: From The Godfather to Apocalypse Now." (available on Amazon with 10 trivia questions per film, with the answers upside-down on the next page.)
I have covered the Chicago International Film Festival for over 20 years and have done SXSW since about 2015 and also, over the years, have been Press at Sundance and the Vancouver Film Festival and in Denver, Nashville, and others (Windy City Film Festival, but that time I was a finalist in the screenplay competition.) The injury to my left knee was devastating for SXSW last year, but they were very kind to me, and, somehow, I made it through the continuous standing that occurs when you are waiting for the "stars" to show up. I hope to be able to continue reviewing, as I have for 52 straight years, for the forseeable future. I also write "long" on occasion and those works (30+) are up on ConnieCWilson.com. To say that I found being in a wheelchair for over half a year inconvenient is putting it mildly. Would any of us want to be unable to take ourselves to the bathroom? Is that the price I must pay to "protect" myself against a recurrence---being semi-crippled? It's not even a guarantee of protection and it's too steep a price to pay. As for the Tamoxifen, my good friend Sue Ann Raymond (now 84) had her lumpectomy in 2013 and was put on Tamoxifen and described how she could not even get out of bed! Sue Ann is an Episcopalian minister in small-town Iowa and she simply pushed the pills back on the oncologist's desk and said, "It's in God's hands." Since then, she has shepherded her flock, jumped out of an airplane to raise money for a new roof, and been approached to run for Mayor. None of those things would have been possible if she had remained on Tamoxifen back in 2013 when it was prescribed to "protect" her. It really is a "risks versus benefits" thing, and, while I am justifiably apprehensive, I practice what I call Eternal Vigilance and try to push thoughts of my demise to the back corners of my over-active imagination. I'm in Austin (Tx) right now, planning our annual trek back to Illinois to avoid the heat of summer and thinking about "writing long" again with a 4th book in my 3-book series "The Color of Evil." I'll be attending the Rolling Stones concert at Soldier Field on June 27 and, in the 3 days after that, the Sundance films are being shown in Chicago for 3 days (although I reviewed most of the winners on my WeeklyWilson blog already.) As I have written elsewhere, my mother---a 4-shots-a-day diabetic---lived to be almost 96 and played bridge ALL the time (once flying to Hawaii to play in a tournament that Omar Sharif played in!). I'm not about to quit living life, nor am I willing to suffer the tortures of the damned on the off chance that these toxic substances might "protect" me somehow. I'm going to be trying to find out about any other clinical trials of the sort explained here:
https://www.icr.ac.uk/news-archive/research-uncovers-how-to-target-sleeping-breast-cancer-cells-and-prevent-relapse

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Profile picture for einnoc @einnoc

I had osteopaenia going in to treatment, and my experience(s) while on Anastrozole for 7 months, including my left knee totally blowing out and putting me in a wheelchair for 6 months, has led me to the very likely conclusion that the knee collapse (of an already fragile joint) was exacerbated by Anastrozole. I started out with the intention of being treated, start to finish, by Genesis in Davenport, given very bad interactions at Trinity in Moline since 2018. I wouldn't even go to Trinity for a simple mammogram after 2018, but the pandemic upended my plans to avoid the Illinois side of the river and the 33 radiation treatments I was told I needed, which was a fairly lengthy process, as you can imagine, did not help, so, having been told that I didn't even need an oncotype, I interpreted that to mean that my b.c. was a garden variety tumor that could just as easily be treated locally. Not sure that was a wise decision, but it is why I ended up back at Trinity and not at Genesis, where I had already selected a surgeon (Dr. Hartmann), who, among other pandemic crises, totally disappeared without a word to the patient(s) as to where he had gone or when he would be back. (It was very weird that those of us whom he was supposed to operate on were not told anything about the sudden cessation of his office. Since I had done some reading on optimal times to have surgery and knew that simply "hanging around" for months wasn't ideal, I tried to be positive and gave in to the idea of going to the much-closer Trinity for the radiation, despite bad experiences there during a breast biopsy in 2018. The reason I have not gone forward with more active treatment for bone loss is that I am "borderline" currently and the discussion(s) on taking biphosphanates (among other things) and on the veracity of Dexa scans are everywhere. With a T score of -2.2T currently, I filled, but did not take, such a pill. It was prescribed me by my endocrinology team at my request. I was told to step up my calcium intake (with D and K) and did. (There is some information out there about whether or not an uptake in calcium can contribute to heart attacks and strokes, so taking 600 mg. in the morning and 600 mg. at night is about all I've done, so far. My next trip in to see the endocrinology team is in early May. Meanwhile, I've been locked into major dental work ($10,000) since November and was glad I could truthfully say I had not taken the biphosphanates that they feared might weaken my jawbone prior to their implant procedures.

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It is so complicated! I took have osteopenia and on Anastrozole. I had Prolia shots in 2019 and massive dental work in early 2021. Luckily everything went well.
I had been in fosamax in earlier years, but my jaw bone was good.
So many things we have to balance now that I never worried about before. I understand what you are saying.
Right now for me it's fatigue. Really struggling.

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Profile picture for einnoc @einnoc

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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I can relate to you as far as the energy needed for an active life. I am struggling now with no energy I could do nothing all day. I try and push through the side effects but need help.
I like that you are a fellow cinephile. I've been attending the Telluride Film Festival since 1997. I have met so many interesting people there. I don't think I will be going back now, but I so enjoyed it. I liked reading about your festival.

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Maybe, but there are plenty of women of all ages who can’t tolerate the inflammatory action of the A.I. pills and are moved to Tamoxifen, instead.

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Profile picture for einnoc @einnoc

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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I thought Tamoxifen is prescribed for premeopause women...

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Profile picture for baylaurel @baylaurel

I hope you will get the care you deserve with your new doctors.

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I hope so, too, Baylaurel. I am in search of the test or clinical trial that will seek out the errant cancer cells that too often lie dormant in our bodies until years after the discovery of the tumor and are (somehow) activated and come back to kill you. My Iowa City oncologist, upon meeting with me, said I was the healthiest of the 22 women he had seen that day and added, "Cancer isn't going to kill you. Something else will kill you first." He is also the doctor who told me that, 3 years prior, the cut-off for having chemo was 29, not 25. That encouraged me, as I can consider my onco score to be "borderline" with that reasoning. Of course, I've seen the man 3 times. The first time he was (somewhat) dismissive of my concerns and, when I sent him the extensive litany of everything I had endured in the Illinois Quad Cities up to that point in writing, and asked him for a recommendation for a "good" oncologist in the Quad Cities, he said, "Why do you think everyone from the Quad Cities comes here for treatment?" and laughed. He is also the physician who told me, 3 days before I was to be radiated 33 times at Trinity Hospital in Moline, that Iowa City would not have radiated me at all! On my 2nd visit to see him, he said he was going to do a breast exam on my next (3rd) visit, which was in October. I went in October. No exam. In fact, I barely saw him at all. His "minions" did the work-up and the weighing and the blood pressure and he barely stuck his head in the door and said, "Hi" and left. He seems to be a very knowledgeable doctor and I like him well enough (although not as much as Dr. Uyeki in Austin who literally went to war with the hospital for me) and most of the time I tell myself that everything he has said to me, so far, lines up with the idea I originally had that, although I had b.c., my presentation was generally positive and, as Dr. Goswami at Genesis in Davenport said, "You did everything right. You're going to be fine." But then I remind myself that it was that "magical thinking" that kept me from going to Iowa City immediately (or Chicago, where I also have a place) and caused me to accept my Illinois oncologist's dismissive attitude and unwillingness to "go the extra mile" in ordering an oncotype, for instance, or humoring my surgeon and ordering a ki67. "Knowledge is power" and, given my college major, I felt and was powerless to advocate effectively for myself in the early days of treatment. I (sometimes) regret the chemo I didn't have as a result of my first oncologist's horrible attitude, and sometimes---given the side effects from everything that I have tried---I am glad I slipped through that crack. I wish I had listened to my friend's husband---a PhD from the Netherlands who researches in the area of cancers---and gone to a Top Notch hospital that was "rated" as one of the Best in the Nation, because the treatment and compassion shown me at the hospital nearest my home in Illinois fell down on many of those benchmarks. I was fortunate that we winter in Texas and I fell under the care of a doctor who is truly dedicated to saving his patients and spent time with me to hear me out and answer all my questions. It was particularly noteworthy because there was an ice storm that week and most of his regularly scheduled appointments had to be canceled (people in Austin don't know how to drive if there's ice). He spent over an hour with me. We were working on getting him all the information he needed to "go to war" to get my oncotype for hours, as I recounted which facilities I had had mammograms at over the years, and---ever since being treated very poorly at Trinity Hospital in Moline, Illinois during my 2018 biopsy, I had vowed to never go back there (That joke is on me, because it was the hospital I had to go to for the 33 x-ray treatments and my fears turned out to be more than justified.) Like all hospitals or schools, you can have a good doctor in a bad system, or you can have a bad doctor in a good system.

The verdict, for me, is out on the other parts of their system, since I do think that both my radiologist and my surgeon did their best and performed their duties well. (One could ask if the treatment was "cutting edge," since Iowa City did not agree that radiation was even merited). But the oncologist who has held sway there for years is truly a narcissist who, on paper, knows his stuff, but whose system of dealing with patients needs serious adjustment, for the good of both the patients and himself. I am still surprised that he hasn't been sued over situations like the one I only learned about (from my employees) after I had had it with him and his dismissive attitude.

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