Concerned about the side effects of anastrozole

In chat,ting with other women on here since my 1/27/2022 lumpectomy, some from the UK, some from the US, I learned that the first "drug of choice" in Europe and England seems to be Laetrozole, versus Anastrozole in the U.S. The chief reason Exemestane is not prescribed first is expense: it is far pricier than either of the other 2 and it is more "different" from Anastrozole and Laetrozole, also. I shouldn't have been prescribed any A.I. drug because of my longstanding participation in a clinical trial for those with a family history of arthritis and some sort of joint injury or damage. In my case, I fell off my bicycle on my left knee while bicycling on vacation in Green Lake, Wisconsin, in 1997. I did not seek medical treatment and could not put any weight on it for a year. I also re-injured the same knee a month or so later when I slipped on a wet marble bathroom floor in Baltmore (MD). I should have sought medical treatment from the get-go, but the couple we were vacationing with (he was a doctor) said that they "wouldn't do much" for such a knee injury, anyway. I applied to be in the MOST study, which was nationwide and went on from 1997 to 2020 until they ran out of money. I had MRIs on my damaged left knee routinely and X-rays of my hips and knees. This was a period of over 20 years, during which my knee had a few "episodes" of being very painful and I received shots for that on 2 occasions, but the pain I experienced after being put on Anastrozole, less than a week out of surgery (Feb. 1, 2022) was truly off the charts. It was the worst pain I have ever had in my life, and I've had 2 children and 3 major surgeries. I was up all night rummaging through my bathroom drawers trying to find something---ANYTHING--to alleviate all of the pain I was experiencing. Oddly enough, I had never had back problems, but my back was killing me, and I also experienced teariness, mood swings, brain fog, blurry vision from dry eyes, dry skin and vivid violent nightmares. Through all this, nobody seemed to care how I was doing, and when I tried to discuss these side effects with my oncologist, he said, "Don't take it then" and got up and walked out. My surgeon called me in for a sort of "exit interview" when I was about 7 months in and I broke down in tears relating the pain and suffering and, also, telling him how much I wished my oncologist had ordered an oncotype (which everyone else in the U.S. seemed to have gotten, and which Google said had been "standard of care" since 2013.) My surgeon suggested that a different test could be done on the tumor (11 mm) that had been removed to gauge its aggressiveness, the ki67. I had asked for the oncotype in December of 2021, when my tumor was discovered, but my oncologist in Illinois simply said, 'You don't need one." When I then asked him about the ki67, suggested by my surgeon, the oncologist said, "I won't order that for you. You'll have to get someone else' and walked out again! We never had a discussion about the 3 A.I. drugs (or anything else) and I don't know if he just didn't know about the MOST study I was in for over 20 years or if he really didn't care, since he only saw me, himself, 2 times in 8 months. So , like a good little soldier, I continued to try to live with the side effects that were literally crippling me, because my left knee blew out on September 15, 2022, as I was walking along a city street in Chcago to meet a girlfriend for lunch. I had to call an Uber to get home and it was really hard to make it to a nearby convenient care clinic, which X-rayed me on September 19th. That place gave me a pain prescription, but said I needed to find someone who could administer injections to my knee for the pain. I couldn't walk to the corner drugstore to pick up the pain pill prescription! I happened to see a joint pain clinic ad on TV for a place located in Oak Brook, IL. I called them and made an appointment and had to drive there in Chicago Rush Hour traffic to be X-rayed again, on September 21. They injected me with 32 ml of an anti-inflammatory, because Anastrozole (or any of the A.I. drugs) will inflame previously injured joints, as I learned firsthand. I was given Tramadol for pain (50 mg.) and I hobbled with a cane and/or had to use a wheelchair, later, for over 6 months. The symptoms mimicked a Meniscus Tear and were very painful. I went back to my home city and had a 3rd X--ray and, when I met with my oncologist for only the second time in 8 months, I was in a wheelchair. He refused to acknowledge that Anastrozole could have anything to do with my semi-crippled left knee. I waited from September until March before I could walk at all and, even now, I have to brace my left knee to do enough walking for the grocery store, for instance. My Illinois oncologist said, "You're just old" and refused to acknowledge that the A.I. drugs had anything to do with my semi-crippling. I now doctor with an oncologist at the University of Iowa, which means a 3-hour drive when in the Midwest, and I have a Texas oncologist, who got me the oncotype the Illinois oncologist refused to order. It was 29. I should have had 3 bouts of chemo according to my Texas oncologist, but 17 months passed before I got the oncotype that nearly everyone else I've spoken with got from the beginning. I had 33 radiation treatments, and I hope that will protect me, since my tumor was 95% estrogen dependent and the odds of a recurrence without Tamoxifen are 36% and with it for 5 years the odds drop to 18%. I tried Tamoxifen for 5 months, also, but that led to debilitating exhaustion and non-stop UTIs. I am off everything since Aug. 30, 2023 and praying that radiation did the trick. I also learned from 3 of my former employees whose mother went to the Illinois oncologist that they feel "He killed our Mom." How? Why? Refused to order any tests to confirm the recurrence that traveled to her pancreas. They tried to take her to the Mayo Clinic, but he said, "Why would you take her there. I interned there. I know everything they know." He blocked or prevented access to her tumor on ice and gave her heavy-duty chemo and she died in hospice. I had a terrible time with the Illinois oncologist and hope no one else ever has to suffer because of his indifference.

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I was speaking with a nurse yesterday and she told me that the first AI that they give to breast cancer patients in the UK is Exemestane because so many women have so many side effects with Anastrozole. Does anyone know the reason many of us in the U.S. are given Anastrozole first? I had awful side effects with it, so I opted to not take it then 4 years later I got another primary breast cancer in the other breast. I was 74 when I decided not to take the Anastrozole and I thought what would be the chance that I would get another cancer in the next 10 years.
I just had a Dexa scan and next week I will find out if I should take Exemestane or not. I have osteopenia and I have had a L3 fracture from just pulling myself out of bed after a painful knee replacement. So, I am concerned if they tell me I should take the medication and I am concerned if they tell me I shouldn't take the medication.

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This comes up on this forum all the time and I ask every time: if the goal is reducing estradiol below detectable levels (and you may be well above that since testing stops at 5), what difference does dose make? if a 20% dose and a 100% dose both reduce estradiol below detectable levels, and the result is side effects from estrogen deprivation are the same, what difference does it make what dose we take? I actually asking the question. I don't see my oncologist anymore but if I did I would ask it.

ps great to have 100% estrogen score- the meds should work well according to what I have been told!

My oncologist told me I could take Femara alternate days. I never did, but that is one option. They tend not to suggest cutting pills due to inconsistency of dose and not sure if it is extended release. If not extended release, maybe your doc would let you do 1/2.

Some meds are weight-based and the company uses an average weight of, say, 150 (Evenity) and when dose does matter, that is a disservice to us small folks.

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In chat,ting with other women on here since my 1/27/2022 lumpectomy, some from the UK, some from the US, I learned that the first "drug of choice" in Europe and England seems to be Laetrozole, versus Anastrozole in the U.S. The chief reason Exemestane is not prescribed first is expense: it is far pricier than either of the other 2 and it is more "different" from Anastrozole and Laetrozole, also. I shouldn't have been prescribed any A.I. drug because of my longstanding participation in a clinical trial for those with a family history of arthritis and some sort of joint injury or damage. In my case, I fell off my bicycle on my left knee while bicycling on vacation in Green Lake, Wisconsin, in 1997. I did not seek medical treatment and could not put any weight on it for a year. I also re-injured the same knee a month or so later when I slipped on a wet marble bathroom floor in Baltmore (MD). I should have sought medical treatment from the get-go, but the couple we were vacationing with (he was a doctor) said that they "wouldn't do much" for such a knee injury, anyway. I applied to be in the MOST study, which was nationwide and went on from 1997 to 2020 until they ran out of money. I had MRIs on my damaged left knee routinely and X-rays of my hips and knees. This was a period of over 20 years, during which my knee had a few "episodes" of being very painful and I received shots for that on 2 occasions, but the pain I experienced after being put on Anastrozole, less than a week out of surgery (Feb. 1, 2022) was truly off the charts. It was the worst pain I have ever had in my life, and I've had 2 children and 3 major surgeries. I was up all night rummaging through my bathroom drawers trying to find something---ANYTHING--to alleviate all of the pain I was experiencing. Oddly enough, I had never had back problems, but my back was killing me, and I also experienced teariness, mood swings, brain fog, blurry vision from dry eyes, dry skin and vivid violent nightmares. Through all this, nobody seemed to care how I was doing, and when I tried to discuss these side effects with my oncologist, he said, "Don't take it then" and got up and walked out. My surgeon called me in for a sort of "exit interview" when I was about 7 months in and I broke down in tears relating the pain and suffering and, also, telling him how much I wished my oncologist had ordered an oncotype (which everyone else in the U.S. seemed to have gotten, and which Google said had been "standard of care" since 2013.) My surgeon suggested that a different test could be done on the tumor (11 mm) that had been removed to gauge its aggressiveness, the ki67. I had asked for the oncotype in December of 2021, when my tumor was discovered, but my oncologist in Illinois simply said, 'You don't need one." When I then asked him about the ki67, suggested by my surgeon, the oncologist said, "I won't order that for you. You'll have to get someone else' and walked out again! We never had a discussion about the 3 A.I. drugs (or anything else) and I don't know if he just didn't know about the MOST study I was in for over 20 years or if he really didn't care, since he only saw me, himself, 2 times in 8 months. So , like a good little soldier, I continued to try to live with the side effects that were literally crippling me, because my left knee blew out on September 15, 2022, as I was walking along a city street in Chcago to meet a girlfriend for lunch. I had to call an Uber to get home and it was really hard to make it to a nearby convenient care clinic, which X-rayed me on September 19th. That place gave me a pain prescription, but said I needed to find someone who could administer injections to my knee for the pain. I couldn't walk to the corner drugstore to pick up the pain pill prescription! I happened to see a joint pain clinic ad on TV for a place located in Oak Brook, IL. I called them and made an appointment and had to drive there in Chicago Rush Hour traffic to be X-rayed again, on September 21. They injected me with 32 ml of an anti-inflammatory, because Anastrozole (or any of the A.I. drugs) will inflame previously injured joints, as I learned firsthand. I was given Tramadol for pain (50 mg.) and I hobbled with a cane and/or had to use a wheelchair, later, for over 6 months. The symptoms mimicked a Meniscus Tear and were very painful. I went back to my home city and had a 3rd X--ray and, when I met with my oncologist for only the second time in 8 months, I was in a wheelchair. He refused to acknowledge that Anastrozole could have anything to do with my semi-crippled left knee. I waited from September until March before I could walk at all and, even now, I have to brace my left knee to do enough walking for the grocery store, for instance. My Illinois oncologist said, "You're just old" and refused to acknowledge that the A.I. drugs had anything to do with my semi-crippling. I now doctor with an oncologist at the University of Iowa, which means a 3-hour drive when in the Midwest, and I have a Texas oncologist, who got me the oncotype the Illinois oncologist refused to order. It was 29. I should have had 3 bouts of chemo according to my Texas oncologist, but 17 months passed before I got the oncotype that nearly everyone else I've spoken with got from the beginning. I had 33 radiation treatments, and I hope that will protect me, since my tumor was 95% estrogen dependent and the odds of a recurrence without Tamoxifen are 36% and with it for 5 years the odds drop to 18%. I tried Tamoxifen for 5 months, also, but that led to debilitating exhaustion and non-stop UTIs. I am off everything since Aug. 30, 2023 and praying that radiation did the trick. I also learned from 3 of my former employees whose mother went to the Illinois oncologist that they feel "He killed our Mom." How? Why? Refused to order any tests to confirm the recurrence that traveled to her pancreas. They tried to take her to the Mayo Clinic, but he said, "Why would you take her there. I interned there. I know everything they know." He blocked or prevented access to her tumor on ice and gave her heavy-duty chemo and she died in hospice. I had a terrible time with the Illinois oncologist and hope no one else ever has to suffer because of his indifference.

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Dear friends,
It would be helpful if you could be more specific in your side effects description. Example: I have been on anastrozole for two months and it seems to make me constipated. Does anyone else have that side effect? Thanks, @raye

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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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I am horrified by your experience. You did not have a doctor you had a narciss. In Hine sight you should have changed Oncologist when he did not do the oncatype.
Can you name the doctor so no one else has your experience?
I pray that the radiation worked and you have good health.

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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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