Just started Tamoxifen - 5mg!

Heather2018

Due to the findings of a recently concluded study, my oncologist and I decided a 5mg dose would be worth trying. Anyone else on 5mg?

Soon the pills will come in 5mg so I won't have to cut 10mg in half...

Engel12345

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

Heather2018

Hi Engel,

Here is the study: https://www.medpagetoday.com/meetingcoverage/sabcs...

I'm on 5mg daily. I'm 41 years old. My oncologist said if I was 20 years older I'd be on at least 10mg...

Hope this helps. Reach out to me with any other questions.

euphonious

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.

Heather2018

Hi euphonius,

Looks like we have a very similar diagnosis, hope you breeze through radiation! Best thing I bought to cope with radiation was supportive, wireless bras, gauze made for eyes (used as nipple protection), and calendula cream.

I've been on Tamoxifen for a week and a half. I'm taking my 5mg at night. So far, I wake up once or twice with night sweats. And my dreams are insane!

I'll keep you posted...

rachelcarter35

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.

Heather2018

Hi Rachel,

The study had women aged 18-75, so you are well within the range. It's worth a conversation. Let me know how it goes.

Best, Heather

astyanax66

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

dtad

Heather2018...just curious why your doc said if you were 20 years older you would need at least 10 mg of Tamoxifen?

rachelcarter35

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?

Heather2018

Hi Rachel,

Could be true that the study included people with DCIS, LCIS (noninvasive cancer). I hope your SEs get better.

Anonymous

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"?

Salamandra

Hey EpicSquirrel (love the name!)

I'm having some harsh side effects from tamoxifen too. My oncologist is not into a lower dose, but in the end, it's my call. All I have to do is break the pill in two. My fatigue is so bad it does feel like it's endangering my livelihood.

Still, before I try that, she approved me changing the brand of my tamoxifen. From reading on these boards, I saw that some women had much better side effects on some brands than others, and it varies from woman to woman, and there's no way to know but to try. I called my pharmacy and they're sending me a different brand to try, and if that doesn't help, they can send me another one, and so on. You can do that right away even without your doctor's involvement.

The other thing my oncologist's office said was that some women tolerate the dose better if they take 10mg in the morning and 10mg in the evening, and they do approve of that. If your oncologist does too, then they can order you the 10mg pills. That could make it even easier than breaking pills if you decide to take yourself down to just 10mg per day.

I have to use a mail order pharmacy for my tamoxifen. While I'm waiting for the new brand to arrive, I'm breaking my pills and doing 10mg 2x per day. I can't say I notice a difference yet but it seemed worth a try.

I don't know about 20mg every other day. I think since it's meant to regulate hormones, 10mg every day might be better but I have no idea. A pharmacist or doctor should be able to make an educated guess. I don't know if they could tell you for sure because they haven't done studies on it. Like they haven't done studies on 10mg per day. So they can't officially recommend it.

If it comes down to taking my chances on an unproven dose of 10mg or losing my job that gives me the health insurance that lets me have meds and screening and healthcare at all, I think I have to do it. But for now I'm trying the different brands and 2x per day thing.

And yup, sounds like it's time for you to find a new oncologist! Ugh.