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?

Interested in more discussions like this? Go to the Breast Cancer Support Group.

@freckle1

Anastrozole seems to be the drug of choice in Australia for estrogen-fed cancers. We have some world leading cancer research centres here. I've been taking it for two years with very few side effects, if any.

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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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@einnoc

Hearing the remark from an oncologist at MD Anderson that Anastrozole is "the drug best tolerated by their patients" makes me less likely to go to MD Anderson. If I did go there because of their reputed expertise, I'd ask you for the name of the oncologist who made that statement so I could avoid that person. Anastrozole has semi-crippled me and caused me the most pain I have ever experienced from anything in 76 years of life; I find it very difficult to swallow that individual's remark without some sort of statistical data to back it up.

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Anastrozole seems to be the drug of choice in Australia for estrogen-fed cancers. We have some world leading cancer research centres here. I've been taking it for two years with very few side effects, if any.

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@robbihm

You’ve given me some hope. I start Anestrzole in June. I’m 58. No joint pain and fairly fit so I’m just hoping I might do okay.

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Good idea to give it a go. Lots of people like me have minimal side effects. And I don't worry about recurrence. (Am sure my family would if I had ignored medical advice!)Make sure you have a bone density test first to establish a baseline, and have them regularly.

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@bevandjim4

I was on Anastrozole 18 months and stopped it because I felt like I was dying. My mammogram showed no growth but decided I would rather take the chance with breast cancer. I’ve been battling thyroid cancer since 2001 and have had 7 surgeries on my neck. Headed back to Houston to see if there’s another clinical trial for me since we just found out that the thyroid cancer has started growing again. I’ve had a trachea tube since 2017. In 2013 I had renal cancer in my right adrenal gland. Had that removed and found out I had breast cancer in 2022. So when the Anastrozole made me so sick I quit it. Will see what the Drs at MD Anderson have to say. I’ve been going there since 2004. I love to bake and the Anastrozole made me so tired that I couldn’t do it anymore. Been off for about 12 days and am back to cooking and baking.

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@bevandjim4, I also invite you to join the discussions in the Throid Cancer support group here https://connect.mayoclinic.org/group/thyroid-cancer/

In particular, see this discussion:
- Anyone else had thyroid tissue regrowth after a total thyroidectomy? https://connect.mayoclinic.org/discussion/thyroid-growing-back/

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@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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I understand the need to avoid certain drugs while undergoing dental procedures; I postponed Prolia for a year for similar reasons. As to calcium supplements, I recently read an article by the Cleveland Clinic which shares the heart concerns for too much calcium in the blood. However, that's only if using supplements as opposed to the many calcium sources in our food which can have the opposite effect.
https://health.clevelandclinic.org/too-much-calcium-supplements

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@dlmdinia

I have osteopenia, and as soon as I started AI's (I've taken both Letrozole and Anastrozole) I was put on Prolia paid for by Medicare. It has to be authorized by Medicare before each shot at least 60+1 days apart. I was also told by the technician for the bone density scan that Medicare would pay for it every year as long as I was actively being treated for bone loss. FYI I've been treated by both UIHC Iowa City and Genesis. I do have BCBS supplemental.
I have osteoarthritis in the knees, and when it got crippling (from Anastrozole?) I took collagen supplements which totally worked.

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As to the collagen, I ordered (Amazon) collagen and put 2 scoops in my morning coffee every morning. I cleared it with my Texas oncologist (some say their doctors disapprove). My knees are still osteoarthritic and were X-rayed most recently in October, right before we left the Quad Cities to winter in Texas. I was asked if the pain was bad enough to warrant a shot for it, and I said "no" at that time. I had fallen in a darkened Chicago theater and was unable to put any weight on my knees at the time, so there was a precipitating event in going in to be X-rayed. I've even been told that, after the injections following the blow-out of my left knee on September 15, 19, 21 and 28 of 2022 (Oak Brook Joint Pain Center) that the osteopaths at Moline's OAR (9/28/2022) could "see cartilage on the patella" in the X-rays they took on---after I'd already had injections of 32 ml of an anti-inflammatory and 6 ml of Durolane on 9/21 and been given some Tramadol pills (50 mg.) for pain. I hope the collagen is helping, but I really feel that I'm "flying blind" most of the time regarding my health status. There seems to be no easy or available way to monitor the dormant cancer cells that might exist in our bodies and little or no efforts are made to measure estrogen levels, before, during or after taking A.I. pills or Tamoxifen. It's all just "take this 20 mg. pill" and pray. I posted the current clinical study that is working towards a method of identifying dormant cancer cells in our bodies and (potentially) weeding them out. In the meantime, I've been a big advocate of giving b.c. survivors all the information we can get. I'm not sure what BCBS supplemental means: I'm guessing it's insurance, but, again, flying blind here. I have Medicare and a United Health Care policy. As for the Signaterra test, yes, I've been told that they primarily want to use it to monitor women who have metastasis and I understand that, but I've also written to and spoken with the company and it seems that a truly motivated person who wanted it to be used to monitor the cancer cells that might (or might not) still be circulating in their body could pay for it themselves out-of-pocket. While it was not cheap, it definitely interested me as a relatively easy method of "monitoring" our condition as we go forward as b.c. survivors, since I'm sure both of us know of many people who went along fine for a number of years before the bad news of a recurrence emerged. It was exactly what my 3 employees whose mother was treated by my former Illinois Trinity oncologist experienced. She had been taking the adjuvant therapy drugs and many years had gone by. When she asked her oncologist to please run tests to find out why she felt that something was "off" in her body, his response was that she couldn't be experiencing a recurrence because she had taken the adjuvant therapy pills. (She was, and it had moved to her pancreas and killed her.) He was similarly resistant to letting her 3 daughters take her to the Mayo Clinic for treatment and was not helpful in regards to gaining access to the tumor removed years prior, (One of his remarks to the 3 daughters, who were lobbying for an oncotype late in the game, which he was not supportive of, was, "After I talk to you three, I need therapy.") I hope you didn't fall under the treatment of the same guy I had, because anyone who says, "Why do you want to take her to the Mayo Clinic? I interned there and I know everything they know" is obviously a huge narcissist who is used to playing God and will brook no discussion about treatments he is not totally supportive of (which means nothing additional that would be expensive, since he "doesn't want to get dinged by Medicare.") I'm impressed with the care and compassion I've received at the Texas Oncology Clinic in Austin; the verdict on Iowa City is still out. Been there 3 times. The oncologist has not (yet) examined any part of my body, including my breasts. On Visit #2 he said he was going to do an exam when I showed up for Visit #3. He did not. He poked his head in the examining room and said "Hi" and disappeared. I see him again on May 24th. It will be interesting to see if the 3-hour drive yields any sort of real "examination" worth the name this next time. At one point he told me that I was the "healthiest" of the 22 women he had seen that morning (which I do not doubt) and that "cancer isn't going to kill you; something else will kill you first," On the positive side, when I asked him to recommend a good oncologist in the Quad Cities he laughed and said, "Why do you think everyone in the Quad Cities comes here for treatment?" He also did share with me the information about how the baseline for chemo treatment had moved downward from 30 to 25 in the recent past, which made me feel slightly better about not having had an oncotype with an onco score of 29.

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@dlmdinia

I have osteopenia, and as soon as I started AI's (I've taken both Letrozole and Anastrozole) I was put on Prolia paid for by Medicare. It has to be authorized by Medicare before each shot at least 60+1 days apart. I was also told by the technician for the bone density scan that Medicare would pay for it every year as long as I was actively being treated for bone loss. FYI I've been treated by both UIHC Iowa City and Genesis. I do have BCBS supplemental.
I have osteoarthritis in the knees, and when it got crippling (from Anastrozole?) I took collagen supplements which totally worked.

Jump to this post

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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@katrina123

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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I appreciate your reply. I read this study when my oncologist recommended that I try exemestane as an adjuvant therapy, since I was unable to tolerate anastrozole. It is my understanding that this study was to determine the efficacy of taking exemestane as a preventative for women who have a high risk of developing breast cancer. It is encouraging that women who took exemestane as a preventive were 65% less to develop breast cancer than those who took a placebo.
In my case, I took anastrozole as an adjuvant therapy after having a lumpectomy and radiation. According to my oncologist, my chance of recurrence without an aromatase inhibitor is 12%. If I took it for a minimum of 5 years, my chances of recurrence would be reduced by 40 to 50% - 7 or 6% respectively.

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@flowergal

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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I started experiencing dizziness, but I thought it was vertigo, never thought it could be due to the Anastrozole. This medication causes so many side effects. My dr told me to stop and we are going to try a different medication in a couple weeks. If I still have the side effects, I've decided to trust God and stop taking them.

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@einnoc

Someo ne asked me if the decline in my bone density was caused by the pills or something else. I cannot say why it was -1.4T in 2017 when my OB/GYN had me get one and steadily declined. I knew I had osteopaenia going in to the treatment(s) and, in my own mind, my age (76 at the time) is certainly a factor, but the extreme effects on my fragile left knee have led me to believe that Anastrozole is a Major Culprit. My Illinois oncologist chose to disagree, saying, "You're just old." It is true that I am old (and trying not to become dead!) The only reason I have such good numbers is that I am a well-controlled Type II diabetic, whose A1C has gone from 7.2 to 5.4. My mom and all 3 of her brothers were diabetics and she was a 4-shots a day diabetic. (One of her brothers was early onset.) I have been doctoring at the Austin Endocrinology Center since 2017 and they told me my numbers since I began with them. My last one was -2.2T and osteoporosis usually starts at -2.4T or -2.5T. I am going to them soon for a new bone scan to determine what my latest reading is. I had bone scans in 2017, 2019 and 2023. Medicare will only pay for them every 2 years. In the case of the 2023 one, it had been 4 years and yet Medicare initially denied the payment, which it took me 2 days of calling to unravel. It seems to have been the oncologist's office coding it incorrectly, but, to find that out, I had to call Des Moines (billing agency), Medicare 2x, and then Trinity Hospital (Moline, IL) billing agency, which never answered the phone, so I went online and typed my inquiries. At the time, I was so laid up with excruciating bone pain (especially my back!) that it was real torture to be on the phone that long, but I kept at it. (Later, the Trinity person wanted to know the NAMES of the African American girls at Medicare I had talked to for hours! Who gets the names of the girls on the phone? As it turns out, they had such unusual first names that we had chatted about their unique names, so I knew that much, but---really? I now have to know the names of anonymous clerks at Medicare because you screwed up the coding? I wonder now if they screwed it up on purpose, since my Illinois oncologist seems to have made it his life's mission to NEVER order any additional tests, especially expensive ones, so he "won't get dinged by Medicare." (This told me by the radiologist on the case). I can report that it took me from May of 2022 until March of 2023 to finally get it approved and paid for by Medicare, despite the obvious need to monitor my bones and bone density, as I was already suffering a decline in bone density from as long ago as 2017. Now, I am probably officially a sufferer from osteoporosis, and, if you ask me, I will tell you that I think it was Anastrozole that did it, because it was 7 months on Anastrozole that caused my left knee to simply quit working. The osteopaths who X-rayed me in Moline told me they could see cartilage on the patella in the X-rays of my osteoarthritic knee joints. They would have had to do an MRI to pin down the exact cause of the excruciating pain (it presented like a meniscus tear), but I was leaving for Texas in 2 days and their very logical question was, "We can order you an MRI, but what are you going to do about it here?" I was X-rayed on 9/19 (Michigan Ave. Convenient Care); on 9/21 (Oak Park, IL joint pain clinic); 9/28 (Moline, IL osteo guys) and on 11/15 in Austin6. I decided to bank on recovery from a meniscus tear. That takes at least 6 months, so I was in and out of a wheelchair and had to hobble with a cane and take Tramadol for pain for those months. It took from September of 2022 to March of 2023. And getting Medicare to pay for it took me hours on the phone from May of 2022 until March of 2023. My Iowa City oncologist has put the blame on the A.I. pills, primarily, coupled with old age and my obviously fragile left knee. I do not know if radiation contributes to bone density loss, but I was radiated 33 times, which seems like a lot. It commenced in May of 2022 and continued until the week before my 77th birthday, which is July 23rd. (This is incorrectly coded on the Trinity Hospital records, but I wrote everything down on a small paper calendar.)

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I have osteopenia, and as soon as I started AI's (I've taken both Letrozole and Anastrozole) I was put on Prolia paid for by Medicare. It has to be authorized by Medicare before each shot at least 60+1 days apart. I was also told by the technician for the bone density scan that Medicare would pay for it every year as long as I was actively being treated for bone loss. FYI I've been treated by both UIHC Iowa City and Genesis. I do have BCBS supplemental.
I have osteoarthritis in the knees, and when it got crippling (from Anastrozole?) I took collagen supplements which totally worked.

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