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Concerned about the side effects of anastrozole

Breast Cancer | Last Active: 5 days ago | Replies (1935)

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@bjohnson511

I spoke with the Cancer Society last week told me there are no clinical trials for new AI inhibitors due to the fact that the series of drugs helps the majority of people. I suggest we all start to call them at 800-227-2345 and continue to push them to do something that isn’t as bad as anastrozole. I feel your pain. I have all the same issues. It’s changed my life dramatically, and I’ve only been on them since Thanksgiving. I have been here anyway, but I have been using keranique spray from CVS for a year and taking biotin and so far so good on the hair.🙏🏻

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@bjohnson511 to me it seems that any drug, or any dose of any drug, that is effective in reducing estrogen to below detectable levels, would have the same side effects. The letrozole insert does say that a 20% dose was effective. Rather than studying different, new drugs, I think it would be helpful to study the best dose, perhaps based on weight and age. But if effective, I would speculate that side effects will remain the same. Interested in hearing otherwise!

It seems like every woman I talk to is having some effects from these drugs - maybe I live in a weird "non-majority" community! It just matters how much you tolerate. I was OK with the warm flashes but the brain fog...Thanks for the support!

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.