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Tamoxifen and anastrozole

Breast Cancer | Last Active: Apr 10 11:36pm | Replies (72)

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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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Replies to "Actually, my Texas oncologist (the one I like) RAISED the dosage. I only agreed to "try"..."

What has happened to you is so wrong on so many levels. I told one of my oncologists that cancer treatment is a crap shoot. He didn't contradict me. It is frustrating that you could spend ten years feeling miserable on Tamoxifen and then get cancer anyway. I was put on 5 mg by an oncologist because I had such a bad time on 20mg. It scared me but when I asked to try 10 mg, he said, "You know what will happen." Well, I didn't. I just felt that he was sitting there waiting for me to get cancer again so that he could go into high gear and do what he does best. Treat cancer. I actually liked this guy in many ways but I switched cancer centers, going to a major one not far from my home state. The oncologist, there put me on 5 mg one day and 10 mg the next, so slightly higher than what you were on. He referred to the Italian study although like you, it isn't the same cancer as that study. It seems bizarre that your doctor would use that study to say you can't stay on a low dose and my doctor says I can. My doctor referred to the "baby-Tam" studies. You can look it up. It seems Tamoxifen has only been studied at the highest efficient dose, not the lowest. But they are starting to find that a lower dose for different breast cancers is just as effective. However, I have gotten a lot of contradictory information both about this study and how long I need to stay on Tamoxifen.
It seems it depends on which doctor you see.
The way I look at it, is I am doing the best I can with a low dose. My present oncologist tells me "low dose is better than no dose."
I might end up with cancer again but at least I will have had quality of life in the meantime.
It's the same for you. You need to live.

And it is distressing that you have had such a hard time seeing an OB/Gyn when you have a problem. You weren't just asking for a "well woman" check up. I'm in New England and I hear the same horror stories here. ER doctors complain that they are over crowded with non-emergency patients but it's impossible to get care from non-ER doctors so we're forced to go to the ER.

I 'm afraid this isn't going to help you much. I just wanted to reach out to you and let you know that you're not alone.

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