Anyone taking 5 mg Tamoxifen: Do you have side effects with 5 mg?

Posted by sue417 @sue417, Feb 17 4:50pm

Hi
Just wondering if anyone on here takes 5 mg of tamoxifen and if so do you have side effects with 5 mg. That's what my oncologist said he will put me on once I'm done on my treatment

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Hi
I am 65 years old just went through dcis breast cancer surgery and radiation my doctor is now going to put me on tamoxifen 5 mg because I have osteopenia with a compression fracture in my spine I would just like to hear from any women that have osteopenia and are menopausal and have had to go on tamoxifen if there were any side effects from doing that I'm just very apprehensive about starting this medication

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@kods

Hello!
I have recently started 5mg of tamoxifen after not tolerating the 3 - AI’s. So far so good with a couple of caveats: fatigue and what feels like an irritated bladder.
I am 65 post-menopause with IDC, ER and PR positive and her2-. I believe I am supposed to take 10mg for IDC but need to reconfirm with onco.
Not sure that is helpful but will look for your experience too!

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Hi Lisa
I take a Cornsilk tablet every evening for my irritated bladder and it really helps. Worth a try? Give it a few days to kick in.

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@sue417

Hi
Yes that is very helpful thank you. I understand the bladder problem I've been having it since last April my oncologist put me on vagifem every third day but I think I need it every other day. I also take Utiva cranberry my pharmacist orders it for me you can also order it on Amazon it is one of the strongest cranberry my naturopath put me on it and I also take a supplement called d-mannose 1000mg a day. I was doing great on this regimen and when I got my radiation the second week which was last week I decided to cut it down to 500 mg a day which is not smart so now I am suffering the consequences so I've had to triple my dosage awaiting my urine results to see if I have to have a antibiotic. I will let you know for sure what my symptoms are once I start the tamoxifen Monday.

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Hi Sue
Try Cornsilk supplements in the evening for bladder irritation. I take it for irritation related to interstitial cystitis and it really helps.

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@krisrwalters

Hi Lisa
I take a Cornsilk tablet every evening for my irritated bladder and it really helps. Worth a try? Give it a few days to kick in.

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Thank you so much!

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@krisrwalters

Hi Sue
Try Cornsilk supplements in the evening for bladder irritation. I take it for irritation related to interstitial cystitis and it really helps.

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Hi
I have never heard of cornsilk . I will investigate.i am on d mannose to prevent uti

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@sue417

Hi
I am 65 years old just went through dcis breast cancer surgery and radiation my doctor is now going to put me on tamoxifen 5 mg because I have osteopenia with a compression fracture in my spine I would just like to hear from any women that have osteopenia and are menopausal and have had to go on tamoxifen if there were any side effects from doing that I'm just very apprehensive about starting this medication

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Diagnosed with stage 1 IDC at age 60, have osteoporosis, so instead of taking AI’s, I opted for 20mg of tam. I developed severe leg cramps, so oncologist lowered dosage to 5mg. I haven’t had any side effects since starting on 5 mg.
I encourage everyone to try the meds, and let your doctor know of any side effects so they can adjust or discontinue the meds - there are options, but you may need to ask about them.

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@sue417

Hi
I am 65 years old just went through dcis breast cancer surgery and radiation my doctor is now going to put me on tamoxifen 5 mg because I have osteopenia with a compression fracture in my spine I would just like to hear from any women that have osteopenia and are menopausal and have had to go on tamoxifen if there were any side effects from doing that I'm just very apprehensive about starting this medication

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Agree. There have been many advances in treatments, even since my first brush with breast cancer back in 2006. Also need to remember that most people when they get past 70 have more than one health problem. Once my mother got to about 85, she was on so many pills that I used to carry around this long list just in case various specialists hadn't kept up! So doctors can't predict any patient's response to any drug, especially if a patient is already on a cocktail of other drugs. Best start with the drug with the best track record of keeping cancer at bay and then make changes as necessary.

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@sue417

Hi
I am 65 years old just went through dcis breast cancer surgery and radiation my doctor is now going to put me on tamoxifen 5 mg because I have osteopenia with a compression fracture in my spine I would just like to hear from any women that have osteopenia and are menopausal and have had to go on tamoxifen if there were any side effects from doing that I'm just very apprehensive about starting this medication

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https://pubmed.ncbi.nlm.nih.gov/33442757/
The above is a link to a research article that showed daily moderate coffee (2-4 cups) consumption reduces breast cancer events in postmenopausal women who either take tamoxifen or who had radiation after surgery by as much as half. There’s more published studies on this if you wish to study it further. So now I consider my daily 2 cups a prescription!

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@sue417

Hi
I am 65 years old just went through dcis breast cancer surgery and radiation my doctor is now going to put me on tamoxifen 5 mg because I have osteopenia with a compression fracture in my spine I would just like to hear from any women that have osteopenia and are menopausal and have had to go on tamoxifen if there were any side effects from doing that I'm just very apprehensive about starting this medication

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Hi
Wish I liked coffee but don't bummer

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I took 10 mg. every other day for 2 months. On that amount, I could (probably) have persevered and---as the others below my remark say---tried the cornsilk tablets or something, as that and a constant urge to urinate were the primary side effects. I didn't feel "right" but it was nothing compared to the 20 mg. a day I took for 3 months which gave me non-stop UTIs and fatigue so extreme that I could only be up for 3 hours. Still felt like I had to pee ALL the time, but, again, on 5 mg. I might have persevered, but after 2 months (April 23, 2023 to June 23, 2023) on the 10 mg. every other day (40 mg. weekly) I was told I needed to move up to 20 mg. a day (140 mg. a week) and that was a bridge too far for me. I am only too well aware of the dangers of UTIs and the one I had 5 days before New Year's Eve this year hung on like a tick! Two strong antibiotics barely touched it and then the after-effects of the 2 antibiotcs (Amoxicillin and one that started with the letter "n") gave me a fungal infection and I had to take another couple pills for that. I went to the OB/GYN lady who, basically, refused to treat me when I was REALLY in distress and had a pelvic ultra-sound (to make sure that 5 months on Tamoxifen had not caused the beginnings of endometrial cancer.) She is someone I hope to never have to see again, as her compassion for a woman who had been suffering A LOT for 2 full weeks and was not getting better was non-existent, but rather representative of what I've experienced a lot of since December of 2021. (My nice Texas oncologist, hoping to check all the boxes and being careful to make sure that the endometrial cancer side effect didn't surface had talked her up as great, but I found her attitude of "You're not my patient" ---when I had had an appointment with her on her books for a full 9 months---to be less than ideal.)

I actually canceled my appointment after her dismissive indifferent attitude, but someone in her office called me up and said that, if I didn't see her when my appointment came up I could forget about being able to get in for at least 3 months (!) and so I kept the 9-months-on-the-calendar appointment and voiced my unhappiness at being left in distress over the technicality of how I had an appointment to see her of longstanding, but the date hadn't quite rolled around yet. To me, it made sense to see an OB/GYN who specializes in older women and staying on top of these tamoxifen side effects (and a female, to boot) rather than bothering my oncologist, but I ended up having to throw myself on his mercy, because, otherwise, I could have ended up like Tonya Roberts. It was brutal, and simply underscored the "new attitude" of many (not all, but many) medical professionals in the 21st century.

My bloodwork from March 7, 2023, was good. After the 5 months on Tamoxifen (Aug. 30, 2023) ten (10) things were way "off." I had the pelvic ultrasound, but not until I insisted that that was why I had come. (She was going to do a pap test, which I probably had not had for at least 20 years. I told her I wanted the one that clears me of having endometrial cancer from Tamoxifen. She acted rather miffed about that, saying that took place in a different examining room and I'd have to get dressed again to walk 10 feet to the other examining room, which I did. She also said something about how it was getting to be late in the day so hurry up. But I got the test and it was fine.

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