Concerned about the side effects of anastrozole
I completed all treatments for breast cancer but now I am supposed to take hormone blocker, named anastrozole. im concerned about the side effects. Has anyone here taken it and did anyone have hair loss?
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I hope you will get the care you deserve with your new doctors.
Has anyone had any increase in blood pressure and/or any cardiac issues while taking Anastrazole?
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1 ReactionI 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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3 ReactionsI am so sorry you have had all these terrible side effects of this medication. I honestly was going down the same road with it and I told my dr no more. I had a knee replacement about 10 years ago and the medicine was affecting the other knee and joints. My oncologist told me to stop with the anastrozole and I am now awaiting what my next medication will be. I do not want the cancer to return but I cannot live the way I was on that medicine. It affected every part of me. My oncologist stated my blood tests reveal I am not far into menopause, and he thinks that may be why my I'm experiencing the problems I am. If the next one does the same thing, I will trust God and come off of it. I cannot go 5-10 years in that condition. I pray you get some relief and help. Praying for you.
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3 ReactionsHappy to hear that you are having few side effects.
I had every side effect in the book and then my left knee blew out, leading to injections of anti-inflammatory drugs (32 ml of one; 6 ml of Durolane; Tramadol for pain) and I could not walk for over 6 months. After the meniscus-tear-like symptoms abated, my left knee (which was injured in a bicycling accident in 1997) did not return to "normal." I have to brace it to walk at all, and it doesn't appear that it is ever going to be "right" again. The thing is, I had been in a nationwide study (the MOST study) of those with a family history of arthritis and/or previously damaged joints from 1997 to 2020. I made numerous trips to Iowa City, Iowa to the University of Iowa Hospitals and Clinics and was X-rayed (hips, knees) and had MRIs of my left knee each and every time, to track the disintegration of my/our fragile joints. With that history, I should never have been given any of the A.I. drugs and told the only side effect was "a little stiffness in your hands and fingers when you wake up first thing in the morning, and it goes away when you quit taking it." Because I am also a Type II diabetic I also know that my bone density declined from -1.4T to -2.4T during this time, which is from osteopaenia to osteoporosis, which gives me a whole new set of problems to deal with. It's not enough to have to worry about my onco score of 29 and diabetes and fibromyalgia, now I get to debate whether or not to take biphosphanates for bone loss/osteoporosis. I'm in the midst of $10 grand worth of dental work right now from 2 teeth simply splitting below the gumline, and my dental insurance tops out at $1500 annually. So, while I am happy to hear that others are dodging the Anastrozole bullet, it got me right where I live, and taking Anastrozole has caused me a great deal of pain, suffering and money. A good doctor would have told me to avoid A.I. drugs and possibly recommended Tamoxifen, which does not "inflame" joints and attack your bone density to quite the extent that Anastrozole, Laetrozole and Exemestane can, Obviously, my oncologist in a smallish rural area was not great, not informed, and not helpful. He only saw me 2 times in 8 months and he still denies that the side effects I mention above had anything to do with taking Anastrozole from Feb 1, 2022 until my knee blew out (Sept. 15, 2022). I've changed doctors, but the damage is done and appears to be irreversible.
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3 ReactionsAnastrozole seems to be the drug of choice in Australia for estrogen-fed cancers. We have some world leading cancer research centres here. I've been taking it for two years with very few side effects, if any.
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1 ReactionGood idea to give it a go. Lots of people like me have minimal side effects. And I don't worry about recurrence. (Am sure my family would if I had ignored medical advice!)Make sure you have a bone density test first to establish a baseline, and have them regularly.
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1 Reaction@bevandjim4, I also invite you to join the discussions in the Throid Cancer support group here https://connect.mayoclinic.org/group/thyroid-cancer/
In particular, see this discussion:
- Anyone else had thyroid tissue regrowth after a total thyroidectomy? https://connect.mayoclinic.org/discussion/thyroid-growing-back/
I understand the need to avoid certain drugs while undergoing dental procedures; I postponed Prolia for a year for similar reasons. As to calcium supplements, I recently read an article by the Cleveland Clinic which shares the heart concerns for too much calcium in the blood. However, that's only if using supplements as opposed to the many calcium sources in our food which can have the opposite effect.
https://health.clevelandclinic.org/too-much-calcium-supplements
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1 ReactionAs 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.
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