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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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@einnoc

I was 76 years old when I was put on Anastrozole. I had given birth to two children (one a 9 lb. boy) and had an abdominoplasty (major surgery), plus various dental things (root canals, crowns) but the pain I experienced from Anastrozole was a 10 on a 10-point scale and the worst pain I have ever experienced from anything. I was up in the night rummaging through my bathroom drawers trying to find something---anything---that could help with the pain. For instance, I knew I had left-over oxycontin from a root canal, but, in reading the contraindications, I learned that you cannot take it with a benzodiazepam and I take Lorazepam nightly (1 mg.) to sleep, so that was out. Throughout this frustrating (and painful) experience I was never asked how I was doing by my oncologist and I also found myself on the phone talking to 3 places (Medicare 2x; Des Moines; and the Trinity Hospital billing people) trying to sort out why Medicare had denied payment for the bone scan that my oncologist finally got around to ordering for me that took place in late May. (Keep in mind that I should have been given a bone scan prior to starting on Anastrozole, which I had been on since Feb. 1, 2022.) My back was absolutely killing me and the weird thing was that I had never had back pain prior to taking Anastrozole, although, when I delivered my second child (at the age of 42) and they injected my spine with the epidural, the pain was significant and the anaesthesiologist had commented that the reason it hurt so much more in 1987 than in 1968 was because "You're a lot older now, and you probably have arthritis in your spine." I credit that latter comment with being the reason I could just barely function with the pain in my back, whereas I had never in 76 years of life had what you would call "a back ache," although there were times that I would go lie in the hottest bath water I could stand to alleviate some stiffness. But pain? Yikes! The pain was horrific, and just never quit. I had insomnia for the entire 7 months of faithfully ingesting 20 mg. of Anastrozole daily, and nobody (but me) really seemed to care. Nevertheless, I persevered, doing what was asked of me, pushed to the breaking point. The breaking point came on 9/15/2022 when I was simply walking along a Chicago street on my way to meet a girlfriend for lunch. There was no injury, like a fall. My left knee simply quit working and became extremely painful, to the point that I had to call an Uber to get home. (The restaurant was going to be a 1.8 mile walk, round trip, so it was not a huge distance. My girlfriend had selected it to save me the horrendous cost of driving my car to the joint and then having to pay the inflated parking rates charged in Chicago.) i struggled down Michigan Avenue to a convenient care that is roughly one block away, after the Uber delivered me to my Indiana Avenue digs. I was X-rayed (no break) and the doctor who saw me said I needed injections, which required a more specialized facility that could give those injections. I had seen ads for a joint pain clinic located in Oak Brook and called them. They sounded like exactly what I needed, but it meant driving there in Rush Hour Chicago traffic (I don't live in Chicago full time, but have a place there.) I made an appointment and gave myself 3 hours to make it there and it took all but 15 minutes of that 3 hours. The Dr. on Michigan Ave on 9/19 (4 day after the injury) had given me a prescription for pain medication, but I was so crippled up that I couldn't walk across the street to the pharmacy to pick it up, and I know almost no one in Chicago who might have helped me. So, I drove to Oak Brook where a board certified doctor who had once practiced in Dubuque (Iowa) X-rayed me again and recommended that I come in for a series of injections over time (14 in all). The problem with that was that I was leaving for Texas for the winter in less than a week. I had to secure a cane and a wheelchair and I decided (after consulting with my hometown doctors at the OAR in Moline, IL) to hope that the problem was a meniscus tear that might repair itself in time. (My Moline doctors said that they could SEE cartilage on the surface of my patella in their x-rays). Therefore, I was reduced to hobbling with a cane, bracing my left knee and rationing the few Tramadol (50 mg.) pain pills I was able to secure. I only got 15 of them, total. These had to be used judiciously to help me as I attempted to cover SXSW, which required me to stand for long periods (not to mention walk in and out). I was Red Carpet for "A Small Light," a National Geographic special about the woman who hid Anne Frank and even had an interview with the principal actresses in that award-winning piece, but it was tough. I was just fortunate that a nice elderly lady, seeing my plight, let me enter the theater in advance of the arrival of the cast to walk the Red Carpet, and then I was able to hobble back out to the Red Carpet at the Stateside Theater when they actually showed up. The other side effects of the Anastrozole included brain fog, blurry vision (attributed to dry eyes by the otphalmologist), teariness, mood swings, excruciating body aches and pains in any damaged joint and in my back, the aforementioned insomnia, and vivid violent nightmares. My surgeon, (who actually did see me and acted like he cared whether I lived or died), after listening to my side effects, went to his office phone himself and called my oncologist's office, saying, "You need to see this patient." I don't think my oncologist would have bothered to meet with me on October 6th (3 days after my first post-operative mammogram) if Dr. McKenzie had not called. During the meeting with me Dr. McKenzie, hearing of my logical concern about recurrence (the oncologist had refused to order an oncotype, so I had no data to work from) suggested that I might request that a ki67 test be done on the tumor to gauge its aggressiveness, which would give me some peace of mind. During the October 6th meeting that resulted from the surgeon's phone call to the oncologist's office, I (finally) got to ask the oncologist face-to-face for the ki67 Dr. McKenzie recommended. His response was to say, "I won't order that for you. You'll have to get someone else" and to get up and walk out! I had tried to tell him of all of the side effects I was experiencing at an earlier point and his response then was to say, "Don't take it then" and to get up and walk out. When I saw him on October 6th (my last time of putting up with this guy) I was in a wheelchair and he adamantly denied that the Anastrozole could have been a precipitating factor in my crippling, saying, "You're just old." I now doctor in Iowa City (a 3 hour drive) and in Texas, where the attitude is quite a bit more in line with the compassion that we all deserve.

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Replies to "I was 76 years old when I was put on Anastrozole. I had given birth to..."

I hope you will get the care you deserve with your new doctors.