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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Someo ne asked me if the decline in my bone density was caused by the pills or something else. I cannot say why it was -1.4T in 2017 when my OB/GYN had me get one and steadily declined. I knew I had osteopaenia going in to the treatment(s) and, in my own mind, my age (76 at the time) is certainly a factor, but the extreme effects on my fragile left knee have led me to believe that Anastrozole is a Major Culprit. My Illinois oncologist chose to disagree, saying, "You're just old." It is true that I am old (and trying not to become dead!) The only reason I have such good numbers is that I am a well-controlled Type II diabetic, whose A1C has gone from 7.2 to 5.4. My mom and all 3 of her brothers were diabetics and she was a 4-shots a day diabetic. (One of her brothers was early onset.) I have been doctoring at the Austin Endocrinology Center since 2017 and they told me my numbers since I began with them. My last one was -2.2T and osteoporosis usually starts at -2.4T or -2.5T. I am going to them soon for a new bone scan to determine what my latest reading is. I had bone scans in 2017, 2019 and 2023. Medicare will only pay for them every 2 years. In the case of the 2023 one, it had been 4 years and yet Medicare initially denied the payment, which it took me 2 days of calling to unravel. It seems to have been the oncologist's office coding it incorrectly, but, to find that out, I had to call Des Moines (billing agency), Medicare 2x, and then Trinity Hospital (Moline, IL) billing agency, which never answered the phone, so I went online and typed my inquiries. At the time, I was so laid up with excruciating bone pain (especially my back!) that it was real torture to be on the phone that long, but I kept at it. (Later, the Trinity person wanted to know the NAMES of the African American girls at Medicare I had talked to for hours! Who gets the names of the girls on the phone? As it turns out, they had such unusual first names that we had chatted about their unique names, so I knew that much, but---really? I now have to know the names of anonymous clerks at Medicare because you screwed up the coding? I wonder now if they screwed it up on purpose, since my Illinois oncologist seems to have made it his life's mission to NEVER order any additional tests, especially expensive ones, so he "won't get dinged by Medicare." (This told me by the radiologist on the case). I can report that it took me from May of 2022 until March of 2023 to finally get it approved and paid for by Medicare, despite the obvious need to monitor my bones and bone density, as I was already suffering a decline in bone density from as long ago as 2017. Now, I am probably officially a sufferer from osteoporosis, and, if you ask me, I will tell you that I think it was Anastrozole that did it, because it was 7 months on Anastrozole that caused my left knee to simply quit working. The osteopaths who X-rayed me in Moline told me they could see cartilage on the patella in the X-rays of my osteoarthritic knee joints. They would have had to do an MRI to pin down the exact cause of the excruciating pain (it presented like a meniscus tear), but I was leaving for Texas in 2 days and their very logical question was, "We can order you an MRI, but what are you going to do about it here?" I was X-rayed on 9/19 (Michigan Ave. Convenient Care); on 9/21 (Oak Park, IL joint pain clinic); 9/28 (Moline, IL osteo guys) and on 11/15 in Austin6. I decided to bank on recovery from a meniscus tear. That takes at least 6 months, so I was in and out of a wheelchair and had to hobble with a cane and take Tramadol for pain for those months. It took from September of 2022 to March of 2023. And getting Medicare to pay for it took me hours on the phone from May of 2022 until March of 2023. My Iowa City oncologist has put the blame on the A.I. pills, primarily, coupled with old age and my obviously fragile left knee. I do not know if radiation contributes to bone density loss, but I was radiated 33 times, which seems like a lot. It commenced in May of 2022 and continued until the week before my 77th birthday, which is July 23rd. (This is incorrectly coded on the Trinity Hospital records, but I wrote everything down on a small paper calendar.)
I did not have much joint pain with letrozole. Hot flashes the first month. I could not do bone meds (Reclast) because the doc didn't order it due to concern about afib, now discounted. Three of my friends have had no problems at all. Just posting for balance.
I started with generic anastrazole, then generic letrozole then brand name letrozole. I had immediate reactions to fillers, which is different from a "side effect." I spent money on brand name and then the last month found a generic I could tolerate. Oh well!
The blessing is you have learned and your story will help so many ✨️
Thank you again for sharing love ❤️
Hopeful, I have refrained from publicizing the oncologist's name, although, when asked in private, I do not hesitate to name names. At the outset of my journey, I had NO family history (or friends) with b.c and thought that his dismissive attitude towards the ordering of an oncotype was based on the fact that, on the surface, my presentation seemed relatively positive: small tumor (11 mm) caught early, no spread, good margins, 95% estrogen positive. I did not know that the onco score would be used not just to plan treatment but also would give a % of recurrence rate for later, which became my chief concern as time went by. I have blamed myself for not insisting on the oncotype, but I am a child of the forties and an English teacher does not claim superiority over the wisdom and training of an oncologist in the world I grew up in. I didn't know (then) that the Modern Medical Mantra has become YOYO (You're On Your Own) It was only after all of my treatment (surgery, radiation, one full year of pills) that I began to study up.
I agree that speaking out to a doctor causes you to run the risk of being blacklisted as "a complainer." I grew up totally trusting in the doctor's judgment, so learning that modern medicine requires one to speak up and become a forceful advocate is new to me. I am a writer, so I wrote everything down and I have given each of my current doctors the full story of my treatment(s). (I actually heard the Texas group discussing it out in the hall through the door, that was ajar, and they were appalled.) I will gladly tell any patient, privately, the name of the offending oncologist who apparently did not spend even a minute finding out about my participation in the MOST study for over 20 years and put me on drugs almost guaranteed to cause inflammation of previously injured joints. When I went to Iowa City and met with the man who is now my Midwestern oncologist, that was his comment: that A.I. pills (not Tamoxifen, but Anastrozole, Laetrozole and Exemestane) will cause inflammation of previously injured or arthritic joints. I am not a doctor and it is simply something that I agonized through, firsthand, for 7 months, with little concern showed by the oncologist's office about any of my side effects. I also was not given the truth when I inquired about side effects, and had to find out on my own from blogs like this #ne. I sincerely hope that you do not have the extreme off-the-chart bone and joint pain that I experienced, because I was 76 years old at the time, had given birth to two children (one a 9-lb. boy) and had 3 major surgeries and it was the worst pain I have ever experienced, bar none---and that includes the $12,000 of dental work I am currently undergoing with dental implants, crowns, root canals, etc. Good luck! Don't suffer in silence for months, like I did.
I was on anastrozole for 2 1/2 months. I had SO many side effects. I think the worst 5 were depression, brain fog, hair loss, daily headaches and constipation.
I declined taking exemestane because aromatase inhibitors would only decrease my chances of recurrence by 5 or 6%. I was told that the side effects can be treated with more drugs, but I was concerned about the potential of more drugs causing even more side effects and an even poorer quality of life. I was not convinced that taking numerous drugs at age 70 would increase my overall survival.
These decisions are not made easily. I truly understand that the choices are even harder for breast cancer patients with higher chances of recurrence or at a different stage of life.
I wish you all well and peace with your decisions.
einnoc...Oh my Gosh, you have been through so much. I am so sorry. It's very concerning that doctors can get by with such unkind, and dangerous behavior. And I think that it's difficult to speak out to a doctor because it could be noted on your health record and then other doctors could be leary of you.
I don't know yet if my oncologist will put me on exemestane but after what you have said I am really concerned. I have had 3 knee surgeries, a wrist surgery, a hip surgery, a finger joint surgery and a L3 fracture so if this drug inflames previously injured joints, I will be in for it. Hopefully, I will be one of the lucky ones that can tolerate it if my doctor wants me to try it.
With AI's I don't see how cutting the pill (inconsistencies) would matter as it is an accumulated effect. With my oncologists approval I took 1/2 dosage with a choice of split pills every day or full tablet every other day. You're still getting the same dose every other day. Also, as others have mentioned, 20% dose still maintains acceptable levels. My oncologist also approved drug free vacations - 6 months on and 1 month off. There's another study I found showing satisfactory results with 9 months on and 3 drug free.
https://www.annalsofoncology.org/article/S0923-7534(21)02492-3/fulltext
I find this blog so helpful. Thank you all for sharing. I have been on anastrozole for about 2 years. Immediately when I started taking it I had debilitating anxiety and brain fog. I did not think I could continue. My Oncologist is great, she believes in alternative medicine. What has worked best for me is acupuncture. It relieved the anxiety and severe joint pain in my hands and shoulders.
I stopped the acupuncture for about 2 months and suffered extremely painful joint pain and edema in my arm. I was surprised that all the symptoms you all have described I started having 2 years in.
I am now back with the acupuncture and Lymphatic massages. The joint pain and the edema is better. The insomnia and extreme fatigue is still here. But so happy for the pain relief I will deal with it.
I usually just read and do not participate in the blog. But I had to write because you all let me know I'm am not crazy and that this is real
Thank you so much! ❤️
I can't with full confidence say why doctors prescribe Anastrozole before Exemestane. What I do know is that when one of my oncologists (I'm now on my 4th) prescribed Exemestane, my pharmacy (chain) did not carry it, had to call around to find it, and charge retail as my insurance Wellcare, did not cover it. I was able to find a GoodRX coupon to make the cost bearable. I recently discovered that the Mark Cuban drug site carries it at an affordable cost.