Concerned about the side effects of anastrozole

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.

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.

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.

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.

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 ?