Tamoxifen and anastrozole

Posted by freebird67 @freebird67, Mar 26 10:00am

Hi all,
I have a question about these AI. I'm pretty much at the beginning of this journey, just had a lumpectomy and now waiting to start radiation. My oncologist said that I will go on a AI but did not specify which one yet. I know most of you ladies are on or have been on them so I would like to know , did they change you mentally and how did you cope with them ? I already know that they will physically 😒 I believe he wants to do this because my mother and 2 sisters had breast cancer and past away.
I lead a pretty active life at the age of 67, gardening, canning, chickens and several hobbies. I know this is long winded but this really concerns me and thinking of refusing them. Your input would be greatly appreciated .

Interested in more discussions like this? Go to the Breast Cancer Support Group.

Wow. Thanks for enlightening me. I'm not crazy after all.

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I too was on 5mg tamoxifen and had bladder leaks ,major crying episodes and my eyes were not right. I did try all 3 AI with crippling joint pain . I just can’t do any of them . I asked my oncologist what is the percentage rate on it vs off it 7%. I feel like me again .
This past year I did surgery 2 small tumors, chemo radiation and Herceptin . Her 2 + ER +

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@bloncape

Drug companies spend large sums of money for testing to get drugs approved. I have read that they use the highest dose possible with a level of toxicity that will gain approval by the FDA. We only need to listen to ads on TV to understand how many side effects drugs can have and that they are all toxic to some people at differing degrees. Higher doses are more profitable. There is no monetary incentive for drug companies to study the effectiveness of lower doses, so fewer studies are done to determine the efficacy 20mg vs. 10mg, for example. Therefore, nearly all women are given the same high dose, regardless of weight, age (older women metabolize drugs differently), or level of estrogen before taking tamoxifen or AIs which is seldom checked. Some oncologists are beginning to consider lower doses, but that seems to be the exception rather than the rule.

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Hello! And good morning! I am so grateful for this support chat. I had been taking ALL 3 of the AIs and had the COMMON and UNCOMMON side EFFECTS the pelvic pain was first. Then the spotting. Then the cramping of all my joints in my body. The rash aka FUNGUS hands toenails. And private parts. It took 2 years for my dermatologist and I to figure the fungus thing out. By taking meds to CLEAR UP THE FUNGUS. then back on the AIs. I did my research and found out that AIs are a pill form of CHEMO. and because my MEDICAL TEAM has lied to me, in regards to the medicine. I have taken myself off of it.

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I have started and stopped Anestrozole 1 time when I was on it for 3 months. I had slight side effects--rash/hives on my face, moodiness, insomnia and a few body aches (fingers and lower back). I had a lumpectomy, but that decided with my family history and personal high chance of breast cancer I wanted a DMX. It's what I always wanted but was pushed to do the lumpectomy. I was told to stop the AI 2 weeks prior to the DMX and start it again 1 week after. I waited 1 month. I'm now 1 month into taking it. I've had slight itchy hivestrash around my eyes again, moodiness and the pain in my back and fingers when I wake up. I've noticed that my planters faciiatis is worse. Every time I see someone with a recurrence, I think I have to fight forward and hope the Anestrozole works and that side effects lessen over time. I am 100% ER+ PR+ HER- I wish you the best for a speedy recovery

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@yollie2020

Hello! And good morning! I am so grateful for this support chat. I had been taking ALL 3 of the AIs and had the COMMON and UNCOMMON side EFFECTS the pelvic pain was first. Then the spotting. Then the cramping of all my joints in my body. The rash aka FUNGUS hands toenails. And private parts. It took 2 years for my dermatologist and I to figure the fungus thing out. By taking meds to CLEAR UP THE FUNGUS. then back on the AIs. I did my research and found out that AIs are a pill form of CHEMO. and because my MEDICAL TEAM has lied to me, in regards to the medicine. I have taken myself off of it.

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@yollie2020, I'm sorry that you had such a rough time with aromatase inhibitors and side effects. I'm glad to hear that the symptoms have since been resolved.

I just wanted to clarify one thing. Aromatase inhibitors are not classified as chemotherapy. However, like chemotherapy and other oral medications, aromatase inhibitors are "systemic" drugs, meaning that they involve treatment that affects the body as a whole or that acts specifically on systems that involve the entire body. Aromatase inhibitors block the enzyme aromatase. This helps prevent the body from producing estrogen.

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@yollie2020

Hello! And good morning! I am so grateful for this support chat. I had been taking ALL 3 of the AIs and had the COMMON and UNCOMMON side EFFECTS the pelvic pain was first. Then the spotting. Then the cramping of all my joints in my body. The rash aka FUNGUS hands toenails. And private parts. It took 2 years for my dermatologist and I to figure the fungus thing out. By taking meds to CLEAR UP THE FUNGUS. then back on the AIs. I did my research and found out that AIs are a pill form of CHEMO. and because my MEDICAL TEAM has lied to me, in regards to the medicine. I have taken myself off of it.

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The cancer center that I go to refers to aromatase inhibitors (AI) as oral chem. I find that term to be misleading. It is my understanding that chemotherapy is cytotoxic, meaning that it can kill cancer cells. AIs starve cancer cells which feed on estrogen by preventing the production of estrogen.

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@einnoc

Actually, my Texas oncologist (the one I like) RAISED the dosage. I only agreed to "try" Tamoxifen and began taking 10 mg. on April 23, and taking it every other day. That would be equivalent to about 5 mg. a day, or 40 weekly. I was on that dosage without too many bad side effects (other than a constant urge to urinate) for 2 full months, because I had read about the Italian Women's Study of 700 women who got by very successfully taking the pills in lower dosages. My doctor (oncologist in Texas) contacted me on June 23 to say that there was no clinical evidence for less than 20 mg. and I should move up to that dosage. He said that my confidence in the Italian Women's Study was misplaced, because those women had tumors that were "in situ" and mine had broken through. So, I followed doctor's orders and stepped up the dosage (as of June 23) to 20 mg. daily, which means 140 mg. a week, up from 40 mg. a week. The effect was (a) EXTREME exhaustion. I literally could only be awake and function for 3 hours a day. Nothing helped. There was no "resting up." My family and I had planned to drift down a Texas River in inner tubes, which was over 3 hours of being "up." I could not go, as I knew I would not be able to stay awake for that long without a nap. (b) the never-ending feeling that you have to pee, which went on on any dosage and (c) non-stop UTIs. The worst one hit me right before New Year's Eve. I had some Mexican amoxicillin and took that. Did nothing. I bought something from Walgreen's. Did nothing. It had now gone on for 10 days and I was becoming desperate. I called the female OB/GYN on whose schedule I had been for 9 months (vaginal ultra sound to guard against endometrial issues). She refused to see me because "I wasn't her patient yet." I pointed out that I had had an appointment to see her for 9 months, but that cut no ice. I got in my car and drove to the closest convenient card, but it was packed with Covid sufferers. (an upsurge in Texas) The office of the OB/GYN called me back and reduced me to tears with their refusal to help medicate me with something that would work. I called my oncologist, and he told me to go to the hospital and leave a urine specimen for testing, so I drove from one town to another to do so. I was given a second strong antibiotic. Took that and the feeling did subside, but was replaced by an overall "itchy" feeling. Had to go in, in person, and be seen (by a minion) and was told that the 2 strong antibiotics had given me a fungal infection (!) Was given 2 pills and told that one would probably do the job, which it did. I don't know about you, but I've had 2 friends who died from UTIs that went wild, I don't want to spend the next 10 years (hopefully) fighting UTIs, which, if they enter your bloodstream, can be deadly (especially in older people, and I'm 78). I also noted that my bloodwork from August 30 showed 10 things that were "off" since I began taking Tamoxifen. I had had bloodwork on March 7, 2023, right before I started on the 10 mg (in April) and everything had looked good. Now, everything looked worse. I quit taking everything from that point on, trusting that my 33 radiation sessions will have killed any errant cancer cells. If I were to have a recurrence, I'd try Tamoxifen again, but I would not take the full 20 mg. dosage, because that was too much for my system, whereas I think I could have stayed on the 10 mg. every other day. As it is, I am taking nothing and feeling good.

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Hi
Holy crap that's a terrifying ordeal you went thru. I can't believe the Dr did not listen at all to your concerns. I am in canada and i have a very good oncologist who went over my medical history and talked to me about my concerns. I am hoping I do well on 5mg. He did have stats from women with dcis on 5mg and the reports are positive. I did have a microscopic invasive cancer but hopefully the radiation has got it all

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@bloncape

Drug companies spend large sums of money for testing to get drugs approved. I have read that they use the highest dose possible with a level of toxicity that will gain approval by the FDA. We only need to listen to ads on TV to understand how many side effects drugs can have and that they are all toxic to some people at differing degrees. Higher doses are more profitable. There is no monetary incentive for drug companies to study the effectiveness of lower doses, so fewer studies are done to determine the efficacy 20mg vs. 10mg, for example. Therefore, nearly all women are given the same high dose, regardless of weight, age (older women metabolize drugs differently), or level of estrogen before taking tamoxifen or AIs which is seldom checked. Some oncologists are beginning to consider lower doses, but that seems to be the exception rather than the rule.

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Hi
I believe that doctors need to take into consideration people's medical history their weight their age and what has worked for 40 years may not be what works now thanks for sharing all that information. Why is it a drug that us suppose to ward off more breast cancer has debilitating side effects its nuts

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I totally agree. It is very discouraging that Tamoxifen has been the standard treatment for women with ER+ breast cancer for almost 50 years. Aromatase inhibitors have been prescribed for 25 years. In all those years, drug companies have not been able to develop treatments without debilitating and often long lasting side effects that leave many of us with no quality of life.

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Hi Freebird,
Many women don't have adverse reactions to these drugs at all.
As my oncologist said, it's those of us who have a bad reaction who write to these sites because we need validation and support People who don't have adverse reactions or mild reactions, just go on with an active life. Try not to anticipate problems. Sometimes they can give you something to help counter the side effects.
That said, if you do start feeling symptoms you haven't had before or worse than usual let your oncologist or NP know. There are to my knowledge three AIs and if they don't work, there is Tamoxifen, which works differently. You might find that one drug makes you feel terrible and another works like a charm. It's different for everyone. Don't anticipate problems. You have a rich life. Keep busy with it. You might not have any side effects at all.

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