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Concerned about the side effects of anastrozole

Breast Cancer | Last Active: Apr 27 1:15pm | Replies (1931)

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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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Replies to "I have osteopenia, and as soon as I started AI's (I've taken both Letrozole and 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.

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.