Concerned about the side effects of anastrozole

Posted by tinalove @tinalove, Jan 31, 2016

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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My oncologist wants me to take Anastrazole as my Onco score was 21. I am post menopausal. I had my Estradiol E2 blood level tested and it is less than 5 (LabCorp doesn’t go lower than a 5 for testing this). That’s low for a post menopausal woman. Please help me understand why I should take the same dose as a woman whose E2 level may be 10 or 15 or 20. Why are we all given the same 1mg dose when our E2 levels may be all different? It seems to me that some of us are getting too much medication, some aren’t getting enough medication while a portion of us may be getting just enough. Could this standardization of dosing be causing the bad effects some women get?

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@denisesjourney123

I have to start it in a week. I’m dreading it!

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@denisesjourney123 with all respect to those who have suffered, I would just say, anecdotally, that most of the women who took aromatase inhibitors that I know did not have big problems. I would add, protect your bones if your DEXA shows osteoporosis.

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@bjohnson511

I’m so sorry to hear all this I’m 72 and this anastrozole drug has changed my life. I don’t have the energy I used along with all of the joint pain you mentioned memory loss. Etc🙏🏻 I promised, I would take this pill until my next bone, scan and mammogram, and then make a decision after that whether to change your medication or go off altogether. Lots of decisions to make not fair this age.🤗

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I have to start it in a week. I’m dreading it!

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If you could tolerate an AI or tamoxifen, that 95% estrogen score would mean they would be pretty effective. I am not sure why there is such variety in our responses to these meds. I am very sensitive to foods and meds but was pretty able to tolerate letrozole as long as I took a long walk every day. Mystifying.

@einnoc you can call the Oncotype company (Exact Sciences as I remember) for an explanation of your 29 score. With such a high estrogen score, there must be an explanation.

Chemo is recommended for scores over 26 but you are close, so maybe at 78 the risks of chemo would be more important than benefits.

I wish there was a way for you to manage side effects of hormonal meds. I could not tolerate generic anastrazole so switched to generic letrozole. I could not tolerate that so I tried brand name (Femara) and could tolerate that. Toward the end of my treatment I did find a generic I could tolerate but I was happy with brand name despite the cost. I wonder if that could help you. Swimming in a warm pool?!

I am 73 and get the quality of life thing! So sorry you have been so adversely affected.

ps Still mystified by your score.I had 95% estrogen score with a grade 3 cancer that also had lymphovascular invasion (lymph vessels in my case) but my Oncotype was 8. A low score does not always mean it is a "good" cancer but indicates that chemo won't be of benefit. I am 9 years out.

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Thanks! That's probably what my Texas oncologist meant. He seems to care about his patients, which is a welcome change. On the other hand, he has told me that he is concerned about the cancer going to places other than my breast(s). I think it is because my tumor is 95% estrogen positive and my oncotype was 29--although I didn't find that out until 17 months had passed, thanks to the Illinois oncologist who refused to order anything.

Since my surgery I learned that he also blocked a different patient from securing an oncotype on her stored tumor, which my Texas doctor has told me is illegal. I wrote to the hospital where this man practices and made them aware of his lacksadaisacal attitude toward even seeing his patients, in person (only two times in 8 months) and got no response at all. I've heard many stories since then, from people who I have known for years, of other instances where he "didn't want to get dinged by Medicare" and the patient was the loser in that equation.

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@einnoc

From my own personal one year on both Anastrozole and Tamoxifen I would say that a reasonable dose of Tamoxifen would be far easier to tolerate than any of the A.I. drugs. If my cancer were a higher stage and grade than it was at the outset, I would have tried to tolerate Tamoxifen longer, but I would probably reduce the dosage or do it every other day. My feeling now is that the cure has been worse than the disease and, while I am as apprehensive as every single cancer survivor in America, I've got to quit doing the very thing that makes me feel that life is almost not worth living. I still would like the ki67 test, to see how slow or fast-growing the tumor was, which would give me some peace of mind, but my current oncologist (Tx) said that the results of the oncotype he fought to get for me gave him more information of that sort then the ki67 test would have. I recently sat through a presentation about a "natural" item that is supposed to help suppress cancer cells and will give that a try, but I really feel that research involving older women is long overdue and that the "one size fits all" approach towards medication is totally illogical.

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@einnoc the company that does the Oncotype told me that the ki67% is included in that test. Along with a few other measures of proliferation. Hope that helps.

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From my own personal one year on both Anastrozole and Tamoxifen I would say that a reasonable dose of Tamoxifen would be far easier to tolerate than any of the A.I. drugs. If my cancer were a higher stage and grade than it was at the outset, I would have tried to tolerate Tamoxifen longer, but I would probably reduce the dosage or do it every other day. My feeling now is that the cure has been worse than the disease and, while I am as apprehensive as every single cancer survivor in America, I've got to quit doing the very thing that makes me feel that life is almost not worth living. I still would like the ki67 test, to see how slow or fast-growing the tumor was, which would give me some peace of mind, but my current oncologist (Tx) said that the results of the oncotype he fought to get for me gave him more information of that sort then the ki67 test would have. I recently sat through a presentation about a "natural" item that is supposed to help suppress cancer cells and will give that a try, but I really feel that research involving older women is long overdue and that the "one size fits all" approach towards medication is totally illogical.

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@einnoc

I was diagnosed on 12/07/2021 and had lumpectomy on 1/27/2022. I was put on Anastrozole on 1/27/2022, roughly a week out of surgery (at a time when I was battling a seroma that required me to take 500 mg. of Cephalexan every 4 hours for weeks. I was not given a bone scan until May 22nd,even though I am a Type II diabetic and have osteopaenia, which, in 2017, was -1.4T. I inquired about an oncotype of my first Illinois oncologist, and he said, "You don't need one." My presentation was 11 mm., good margins, no spread according to seminal lymph node biopsy and 95% estrogen positive. Because my oncologist refused to order an oncotype, I did not receive chemotherapy, although my current Texas oncologist says, had I been his patient, I would have had 3 bouts of chemo. Iowa City, where I now have to drive 3 hours to doctor, said they would not have radiated me at all, because I am a woman in my 70s. (76 at the time of diagnosis). They told me that 3 days before I was to start radiation sessions in late May. I first noticed symptoms while we were in Cancun, Mexico, where we go for Weeks 13 and 14 of each year (time shares). I was at dinner with 17 family members when I suddenly got very teary and felt that I was going to cry (for no good reason.) I excused myself and went to the rest room to avoid making a scene. The "game night" in our unit was canceled, as I went right to bed after dinner. (My daughter was unhappy, as it was only 8:30 p.m. and I am known to be a night owl.) I had brain fog, EXTREME joint pain that was the worst pain I've ever had in my life, teariness, blurry vision to the point of consulting an opthalmalogist (he said dry eyes), dry skin, insomnia and vivid violent nightmares. On September 15, 2022, while I was walking along a city street in Chicago (no fall or injury) to meet a girlfriend for lunch my left knee---previously injured in a bicycle accident while on vacation in 1997---quit working. The symptoms were like a meniscus tear. I had X-rays o 9/19, 9/21, 9/28 and 11/15. On 9/21 I went to a joint pain clinic and was injected with 32 ml of an anti-inflammatory drug and 6 ml of Durolane and was given Tramadol for pain. I had to hobble with a cane and was wheeled to my first post-operative mammogram (on Oct. 3) in a wheelchair, which I was in, off and on, for 6 months. I now cannot walk any distance without bracing my injured left knee, which has meant a lot of changes in my life. (I am a critic for film festivals and often have to stand for long periods of time on Red Carpets, awaiting the talent. I did stand from 3:15 p.m. until 5:30 p.m. at the SXSW Premiere of "Stormy" (documentary on Paramount Plus) on March 8th, and it was not easy for me. I had been placed in an arthritic joint/damaged joint study, the MOST study in 1997 and was in it until 2020. My doctor either didn't know or didn't care and he has effectively semi-crippled me for life. My surgeon called me in to ask how I was doing (my Illinois oncologist never saw me, but pawned me off on "the " and only saw me 2x in 8 months). I told him I was completely desperate, the pain was unbearable, and I was very concerned about recurrence, but, without an oncotype, I had no idea whether I was at high risk or my otherwise good presentation somewhat protected me. He suggested I ask for a ki67 to gauge the tumor's aggressiveness. I asked (through the patient portal) for 17 months. My doctor never met with me. but twice. At the first meeting, I told him of my side effects and he said, "Don't take it then" and walked out. No discussion of any alternatives to Anastrozole, and I don't think he ever knew or cared that I had been identified as someone who had a family history of bad arthritic joints and also had damaged her left knee in a bad bicycle fall. At the second meeting (Oct. 5, three days after my NED mammogram, which I was in a wheelchair for) I asked him in person to please order a ki67 to give me peace of mind. He said, "I won't order that for you. You'll have to get someone else" and walked out. I asked the radiologist why this physician would never order things that other cancer doctors have considered "standard of care" since 2013 and he said, "He doesn't want to get dinged by Medicare." We spend winters in Texas and I had a HerScan test that did not go well and led me to my current Texas oncologist, who got me the oncotype. It is 29. Over 25 usually means chemo, but it had been 17 months. He convinced me to try Tamoxifen, which I did for 5 months, but my experience with the Anastrozole was so bad that I told him I was going to take only 10 mg.. not 20 and I then took that from April 23, 2023 until June 23rd. The side effects were bearable, but there. I constantly had to urinate and everything from the waist down felt dry and itchy and uncomfortable. On July 23 my Texas oncologist said I should move up to 20 mg. because there is no data or clinical trials for amounts less than that. I complied and began taking 20 mg. daily. I had EXTREME fatigue (could only be up for 3 hours daily), non-stop UTIs and the 2 different antibiotics given me for the UTI led to a fungal infection. I had a pelvic ultrasound to make sure that 5 months on Tamoxifen had not led to endometrial cancer. (It was okay). I quit all adjuvant therapy drugs on August 30, 2023. I cannot spend the next 10 years this way. I am now 78 and am 2 years and 2 months past surgery. I feel more-or-less normal and just covered SXSW for 8 days, turning in 32 reviews for my WeeklyWilson blog and for ThetMovieBlog. I still can't walk as well as I could beforen a completely egotistical, narcissistic, uninformed, uncaring physician consigned me toa wheelchair with his high-handed (and uncompassionate) treatment, but I now will not suffer in silence as I did initially. I spent one full year trying to adjust to the toxic substances in these drugs. I am 78 years old and also battling Type II diabetes, osteoporosis (my bone density declined from the -1.4T mentioned above to -2.2T where osteoporosis usually starts about -2.4T. I have lost 44 lbs. and joined a gym. I will try to stay on top of recurrence, which is estimated to be 36% if I don't take Tamoxifen for 5 years minimum. and 18% if I do. It is sheer lunacy that older women are not in clinical trials to determine dosage based on age, weight, etc. I no longer trust the medical establishment and feel that the modern medical mantra is YOYO: You're On Your Own.

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I’m so sorry to hear all this I’m 72 and this anastrozole drug has changed my life. I don’t have the energy I used along with all of the joint pain you mentioned memory loss. Etc🙏🏻 I promised, I would take this pill until my next bone, scan and mammogram, and then make a decision after that whether to change your medication or go off altogether. Lots of decisions to make not fair this age.🤗

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I forgot to mention 2 other notable things about my "treatment" (or lack thereof). I was definitely eligible for a bone scan, covered by Medicare, which pays for them every 2 years routinely. And then there is the additional factor of my diagnosis of cancer, the upcoming radiation, and the osteopaenia that I then had. The Illinois oncologist didn't get around to scheduling it for me until May 22, which was 4 full months after I began taking Anastrozole daily, but I did have one (the -2.4T one). Medicare refused to pay for it. I ended up having to spend about 3 hours on the phone trying to figure out why Medicare had failed to cover this necessary test. I spoke to the billing department of the local hospital, which was in Des Moines, Iowa. They said I had to speak to Medicare. I was on hold for Medicare for hours with a raging back ache. I was told I had to speak to the local hospital, but nobody answered the phone. However, they had an "online" chat thing and I asked the very reasonable question as to WHY Medicare would deny payment of a bone scan for me on May 22, 2023. The best guess of the Medicare girls, African American employees with unusual first names, was that the doctor's office had "coded it wrong." I had to take it up with the oncologist's office and months of delay ensued. I had the bone scan on May 22, 2022. I didn't find out that Medicare had reversed its ruling and would pay for it until March of 2023. Secondly, on my last visit to see "the minions," as I called the various female assistants, who were all tall and thin with names like "Heather." She droned on about bone density so long that I thought I might fall asleep. It was October, just shortly before we were leaving the Midwest for Texas to spend the winter. She kept telling me to "make an appointment on your way out." i told her that I had no idea exactly when we would return to the Midwest, so I wouldn't be making an appointment until we returned, probably in May or June. So, I'm sitting i our small winter home in Austin in April when my cell phone rang. It was the oncologist's office, reminding me that I had an April 9th appointment. I did NOT have an April 9th appointment, as I had not made ANY appointment, but they had simply gone ahead and made one for me as though I had agreed to it. I called and told them that I would never be back and I now drive a significant distance to the University of Iowa Hospitals and Clinics to be supervised, when I'm not in Texas for the winter months (October until May). I hope my decision to go through with 33 radiation treatments will protect me from a recurrence, but there were so many things done "wrong" or done with a high-handed "do what I say and don't question me" attitude, that I asked the Iowa City physician who(m) he could recommend in our Illinois Quad City area that would be a good oncologist. He laughed and said, "Why do you think everyone in the Quad Cities comes here?"

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@einnoc

I was diagnosed on 12/07/2021 and had lumpectomy on 1/27/2022. I was put on Anastrozole on 1/27/2022, roughly a week out of surgery (at a time when I was battling a seroma that required me to take 500 mg. of Cephalexan every 4 hours for weeks. I was not given a bone scan until May 22nd,even though I am a Type II diabetic and have osteopaenia, which, in 2017, was -1.4T. I inquired about an oncotype of my first Illinois oncologist, and he said, "You don't need one." My presentation was 11 mm., good margins, no spread according to seminal lymph node biopsy and 95% estrogen positive. Because my oncologist refused to order an oncotype, I did not receive chemotherapy, although my current Texas oncologist says, had I been his patient, I would have had 3 bouts of chemo. Iowa City, where I now have to drive 3 hours to doctor, said they would not have radiated me at all, because I am a woman in my 70s. (76 at the time of diagnosis). They told me that 3 days before I was to start radiation sessions in late May. I first noticed symptoms while we were in Cancun, Mexico, where we go for Weeks 13 and 14 of each year (time shares). I was at dinner with 17 family members when I suddenly got very teary and felt that I was going to cry (for no good reason.) I excused myself and went to the rest room to avoid making a scene. The "game night" in our unit was canceled, as I went right to bed after dinner. (My daughter was unhappy, as it was only 8:30 p.m. and I am known to be a night owl.) I had brain fog, EXTREME joint pain that was the worst pain I've ever had in my life, teariness, blurry vision to the point of consulting an opthalmalogist (he said dry eyes), dry skin, insomnia and vivid violent nightmares. On September 15, 2022, while I was walking along a city street in Chicago (no fall or injury) to meet a girlfriend for lunch my left knee---previously injured in a bicycle accident while on vacation in 1997---quit working. The symptoms were like a meniscus tear. I had X-rays o 9/19, 9/21, 9/28 and 11/15. On 9/21 I went to a joint pain clinic and was injected with 32 ml of an anti-inflammatory drug and 6 ml of Durolane and was given Tramadol for pain. I had to hobble with a cane and was wheeled to my first post-operative mammogram (on Oct. 3) in a wheelchair, which I was in, off and on, for 6 months. I now cannot walk any distance without bracing my injured left knee, which has meant a lot of changes in my life. (I am a critic for film festivals and often have to stand for long periods of time on Red Carpets, awaiting the talent. I did stand from 3:15 p.m. until 5:30 p.m. at the SXSW Premiere of "Stormy" (documentary on Paramount Plus) on March 8th, and it was not easy for me. I had been placed in an arthritic joint/damaged joint study, the MOST study in 1997 and was in it until 2020. My doctor either didn't know or didn't care and he has effectively semi-crippled me for life. My surgeon called me in to ask how I was doing (my Illinois oncologist never saw me, but pawned me off on "the " and only saw me 2x in 8 months). I told him I was completely desperate, the pain was unbearable, and I was very concerned about recurrence, but, without an oncotype, I had no idea whether I was at high risk or my otherwise good presentation somewhat protected me. He suggested I ask for a ki67 to gauge the tumor's aggressiveness. I asked (through the patient portal) for 17 months. My doctor never met with me. but twice. At the first meeting, I told him of my side effects and he said, "Don't take it then" and walked out. No discussion of any alternatives to Anastrozole, and I don't think he ever knew or cared that I had been identified as someone who had a family history of bad arthritic joints and also had damaged her left knee in a bad bicycle fall. At the second meeting (Oct. 5, three days after my NED mammogram, which I was in a wheelchair for) I asked him in person to please order a ki67 to give me peace of mind. He said, "I won't order that for you. You'll have to get someone else" and walked out. I asked the radiologist why this physician would never order things that other cancer doctors have considered "standard of care" since 2013 and he said, "He doesn't want to get dinged by Medicare." We spend winters in Texas and I had a HerScan test that did not go well and led me to my current Texas oncologist, who got me the oncotype. It is 29. Over 25 usually means chemo, but it had been 17 months. He convinced me to try Tamoxifen, which I did for 5 months, but my experience with the Anastrozole was so bad that I told him I was going to take only 10 mg.. not 20 and I then took that from April 23, 2023 until June 23rd. The side effects were bearable, but there. I constantly had to urinate and everything from the waist down felt dry and itchy and uncomfortable. On July 23 my Texas oncologist said I should move up to 20 mg. because there is no data or clinical trials for amounts less than that. I complied and began taking 20 mg. daily. I had EXTREME fatigue (could only be up for 3 hours daily), non-stop UTIs and the 2 different antibiotics given me for the UTI led to a fungal infection. I had a pelvic ultrasound to make sure that 5 months on Tamoxifen had not led to endometrial cancer. (It was okay). I quit all adjuvant therapy drugs on August 30, 2023. I cannot spend the next 10 years this way. I am now 78 and am 2 years and 2 months past surgery. I feel more-or-less normal and just covered SXSW for 8 days, turning in 32 reviews for my WeeklyWilson blog and for ThetMovieBlog. I still can't walk as well as I could beforen a completely egotistical, narcissistic, uninformed, uncaring physician consigned me toa wheelchair with his high-handed (and uncompassionate) treatment, but I now will not suffer in silence as I did initially. I spent one full year trying to adjust to the toxic substances in these drugs. I am 78 years old and also battling Type II diabetes, osteoporosis (my bone density declined from the -1.4T mentioned above to -2.2T where osteoporosis usually starts about -2.4T. I have lost 44 lbs. and joined a gym. I will try to stay on top of recurrence, which is estimated to be 36% if I don't take Tamoxifen for 5 years minimum. and 18% if I do. It is sheer lunacy that older women are not in clinical trials to determine dosage based on age, weight, etc. I no longer trust the medical establishment and feel that the modern medical mantra is YOYO: You're On Your Own.

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Whew, you made me re-examine and I know now how lucky I am to have the doctors I have. I go to a Breast Cancer Center - an adjunct to the hospital. It's a place for breast cancer only, treatment and support. I am so sorry that you had such bad treatment. Good counseling and support are out there. I have phone calls from support people, follow-up visits, etc. I must say, my surgeon is a woman, my oncologist is a woman, and my support comprises female oncology nurses. Hm, there seems to be a running thread here. BTW, I am 78.

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