Just started Tamoxifen - 5mg!

Hi Heather

I live in France and finish my radiation next week. I then have to decide on Tamoxifen or Als. What findings are you talking about? Hard for me here to read whats in health news as my French it not perfect. I did think about taking a smaller dose I think normal dose of Tamoxifen here is 20mg

Warm regards Engel

I won't be starting until after radiation, so sometime in May, but my oncologist also agreed to 5 mg after I brought up the study. I'm looking forward to hearing how others are doing and if their side effects are less.

I'm 55. I wonder if I can half my dose. I think I will message my oncologist and find out what he thinks. I can handle the hot flashes but my new belly fat is bumming me out.

Hi, all,

My MO etc. are near impossible to reach by phone, but I’m going to see them in about 2 weeks anyway. I was on 20 mg, and after a lot of SE, I tried easing back to 10. Better—not perfect, but much more tolerable. I mean, if the goal is to have a steady stream of Tamoxifen in the system, I’m there. I also had ovaries removed several years ago. I will tell them, but I think for me, the SE were tough.

Dee

I messaged my oncologist asking about the Italian study and asking what he thought about at least halving it to 10 mgs. He said he wouldn't recommend it and that that study was on women who had not already gotten breast cancer. I'm so confused. If I cut back perhaps I'd be fine and for sure would have less SEs but what if I have reoccurrence down the road. Could I forgive myself?

My oncologist refuses anything but 20mg. I tried Effexor for the severe hot flashes and night sweats, but had to stop taking the effexor after about a year, as I developed neurological type of side effects -- dizzy, nasea, coordination/balance issues, and memory issues. I had a reallllllly hard time going off the Effexor, was in a situation where I was opening the capsules myself and counting the little beads to bring myself down (I tried going "cold turkey" from the 150 mg as my Oncologist had suggested I do and I literally could not function from the dizziness.. I'm sensitive to meds) But I was still sad to have to give up the effexor because it did make the hot flashes somewhat tolerable, and as a bonus it helped my mood (which before tamoxifen was always good, but on tamoxifen I have moodiness issues)

After that horrible experience my oncologist was like "good luck to you" lol -- I guess she didn't want to mess with prescribing me anything else, but shejust insisted that I stay on the 20mg tamoxifen. She said I should talk to my gyn about other options to counteract my symptoms, as my being 50 years old she said these are not really tamoxifen side effects but rather it is just "menopause" and she's not an expert in menopause.

Yes that's correct, a breast cancer oncologist said she is not an expert in menopause symptoms. (Bonus question: should I change oncs?)

So, gyn put me on something called Relizen, some "natural" pollen extract that I took faithfully for almost three months but it did nothing for me (and a doctor friend told me she wouldn't take it, as there are no good studies to back it up). So I went to my primary care doc and she has me trying Gabapentin. (I see her again next week to assess -- the low gabapentin dose is helping with the night sweats, but I can't take it during the day because of sleepiness)

But my God I would LOVE to try a lower dose of tamoxifen. These hot flashes are severe and often and are interfering with my job and my life. Like I feel like I'm going to lose my job (which I need for the money and health insurance) if I can't get this under control. I have a history of being sensitive to medications in general, and feel like if a lower dose would allow me to stay on the tamoxifen I'd like to do that.

Would it be bad for me to take the 20mg pill every other day? Is there a problem with every other day dosing, like am I doing something bad to my body by going "back and forth"?