Concerned about the side effects of anastrozole

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.

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.

Yes, Sequoia. I know this and---17 months after politely requesting the oncotype through the patient portal repeatedly---my new oncologist in Texas got it for me. It was 29. This means that my recurrence % is 36% if I take no adjuvant therapy pills If I were to take Tamoxifen for 5 years the % for recurrence drops to 18%. Neither is a particularly "good" score and---if he had ordered the oncotype at the outset of my treatment in December of 2021---my current Texas oncologist says he would have ordered 3 bouts of chemotherapy for me. (He said what kinds, too, but I don't remember the technical names.)

So much for "you don't need one."

Learning the recurrence score was the main reason I wanted one at the late date of spring, 2023. I had hoped it would put my mind to rest about the likelihood of another tumor forming. It did not. A score of 25 or above usually indicates the need for chemo.

On the other hand, my Iowa City oncologist (I no longer struggle with the guy who only saw me 2x in 8 months and was horrible in every way) told me that the threshhold for chemo was lowered to 25 from 30 about 3 years ago because of the proliferation of younger women being diagnosed with b.c. By those standards we could view my score of 29 as "borderline" and excuse the failure to suggest chemo.

I don't feel sad that I missed the window for chemo back in 2022, because I am of the opinion that older women (I am almost 79) will not tolerate some of these extremely toxic preventative pills or actions as well as our younger counterparts. My Texas oncologist agrees that the window for chemo has closed. He did talk me into trying Tamoxifen (for 5 months) but, much like the 7 months on Anastrozole, the side effects were so debilitating that the risks, to me, outweigh the benefits. I had nonstop UTIs, which, at almost 80, are not something to fool around with, and the fatigue was so debilitating that I could only stay up for 3 hours at a stretch. I also felt as though I had to urinate non-stop.

My advice to others is not to try to be a "good little patient," putting up with horrible pain and being ignored by the primary physician. I should have spoken up more loudly and not just let him walk out of the few (2) appointments that he bothered to show up for. Usually, I was pawned off on "the minions," a cast of P.A.'s who all looked alike and seemed to be very submissive drones who were about as memorable as a doorknob. They never asked how I was doing and they never listened if and when I tried to tell them. They also were responsible for the tactic of saying, "That is a question you need to take up with the doctor" and "shining me on."

@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.

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.

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 ?

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?

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.

(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.)

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.