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

OMG that's horrid do sorry you won't thru all that

Well, I was so grateful to my Texas oncologist for going to bat for me and getting me an oncotype score almost 2 years after I started asking for one (diagnosed Dec. 7, 2021, in Illinois and did not get it until 2023 in Texas). He asked me to try the Tamoxifen and I felt I should. I only got him as my oncologist when I went in for an ultrasound (HerScan) on the one year anniversary of my lumpectomy (1/27/2022 to 1/27/2023). I flunked that test (which I paid for out-of-pocket) rather badly and it led to my current doctor and my 3rd diagnostic mammogram and their desire to do a stereotactic biopsy. I asked that they gather all of my previous mammograms to monitor for change, instead. As for the UTI experience, seldom (if ever) have I been reduced to tears while driving to a Convenient Care, but that is what happened with the OB/GYN lady's receptionist person. Absolutely not a chance that they would see me, despite being on their docket for a full 9 months. I pulled into the parking lot of the Convenient Care in Buda, Tx,, dried my eyes, pulled myself together, and my cell rang again. It was a nurse from that woman's office calling me to tell me to call my oncologist (really about the only avenue left me, short of the Convenient Care). I did so, since I was desperate. The receptionist at the Texas Oncology Hospital said, "Do NOT go into the Convenient Care. I will tell the nurse here. They will call you back ." She reassured me that they generally called back rather quickly and repeated, again, that I should not enter the Convenient Care (which, at the time, was packed with people who were apparently suffering from an upsurge in Covid.) I wiped my tears and sat in my car for 45 minutes waiting for the call back from my oncologist's office. (Luckily, I had my Ipad with me and played euchre to pass the time). That receptionist asked if I could get to the hospital in a nearby town within the next 40 minutes (I was rather far away in a different Austin suburb). I said I thought I could. She told me to immediately come into the lab there and leave a urine specimen, which I did. I was given a second strong antibiotic that actually worked (although, after the UTI feeling passed, everything just felt itchy and I ended up having to go in in person again. A P.A. diagnosed a fungal infection and that required one (or two) pills that did stop the horrible itchiness. I have a healthy and well-deserved fear of UTIs becoming really serious, as one of them killed one of my best friends, Nelson, who had had colon cancer (and a colostomy bag) and battled UTIs constantly. I was also aware that Tonya Roberts (one of "Charlie's Angels") died from one at the age of 65. (Look it up). And I'd been suffering for nearly 2 weeks when all this occurred. This experience did not make me want to continue taking Tamoxifen, although I will say that it was potentially something that, at a low dosage of 5 or 10 mg. daily, I could have toughed it out. My experiences on Anastrozole were so bad that it required a lot of fortitude to even try yet another adjuvant therapy drug. I've not taken any of them since Aug. 30, 2023. Naturally, it concerns me, but so do the experiences I've had in trying to tolerate adjuvant therapy drugs for a full year. I really tried and it does concern me that I've now stopped taking the drug(s) they say will "protect" me, but, as I've said elsewhere, I began to feel that I needed protection from the protection.

Hi
Wow again your whole experience leads me to believe that something is better than nothing and I'm not understanding why the doctors didn't just put you on 5 mg and go from there I'm so hesitant to start this medication. I saw my new general practitioner yesterday and she would not do an internal I had to book that for June she did do blood work in a urine sample but she did not do a Midstream urine I still don't know my results from my cystoscopy with the urologist all I know is that he said that I had to go on vagifem through my general practitioner. My general practitioner at the time was a male who was an a******. He literally sat down and this is the third time mind you I have ever seen him in 4 years normally his nurse practitioner was there but she quit and now I know why he started yelling at me going through every health issue I have and refused to give me the medication and told me to get out of his practice. That left me in hysterical tears I called my oncology coordinator who then talked with my oncologist and he prescribed the medication so I am assuming I have intersistential cystitis because I have all the symptoms and my urines are clear I do want clarification on this when I see my doctor in June and I will just be going to the emergency if I have any issues prior to that appointment. I find the medical care with general practitioners is lacking huge compared to my doctor that I had for 40 years she was amazing it leaves one wondering for sure. I hope that you do well not taking any other therapy.

Be careful with vagifem. It gave me horrible migraine headaches and mood swings. Now that I am off it, I feel so much better!

How much did you take? I do it twice a week. No headaches or moodswings. Once it gets my bladder issue under control I will do it once a week it takes 12 weeks to work

I took it twice a week. I never did the loading dose either. I took it for a little over a year. I never thought the vagifem was giving me the headaches. Once I contacted me doctor, they told me yes, this could happen. So I dropped back to once a week. The headaches were less but still there and throbbing so I just stopped! I got tired of it:(.

Hi
Were you ever on HRT? My urologist put me on the vagifem originally because I have had so many bladder infections in the last year I'm 65. My new general practitioner just changed my dose because she said it's causing the problems I'm having so I'm off at right now going to restart next week and do it Monday and Thursdays and then if I get the issues I was having back I will just try once a week but since I am now on tamoxifen 5mg I'm hoping I can stay on it

No, I never was on hrt. Just the vagifem. I start tamoxifen soon. I am 46. I never really had much bladder infections. My gynecologist put me on the vagifem because I was mainly having dryness symptoms and frequent peeing. Plus I did have a little bit of bladder pressure. No UTI’s thank goodness! However , my radiologist did say at my consultation appt that the vagifem does get absorbed a little bit into the system. So I think because I am pre menopausal , with the vagifem was just to much for me. Hence the migraines and moodiness.

Hi
Well good luck all I know is when I was going through menopause because I'm 65 now I had to go on HRT because the moodiness and the crying was crazy and I was on it for 10 years and didn't have any issues with it until I was diagnosed with breast cancer last October but they told me the HRT did not cause it so I'm doing the vagifem

Thanks! Yeah unfortunately when I go through menopause I can not take any hrt because of breast cancer. Hopefully it won’t be that bad. But I can for sure tell you I feel MUCH better off of vagifem. Good luck to you as well !
Just curious how are you feeling on tamoxifen? Any bad side effects?