DCIS low dose tamoxifen and effects

Sheilaredfire

Hello everyone,

Sending much love and good things to all. I was recently diagnosed with DCIS (second time around, other breast) and different from last time where I was required to have radiation and 5 years on 10mg of tamoxifen, the doctors are now saying that I could potentially skip radiation and go with a low dose (3mg) of tamoxifen for 3 years.

I made it 2.5 years previously on tamoxifen due to the poor quality of life and disposition. I’m wondering if anyone else has had experience with the low dosage and experienced side effects and can share whether they were tolerable or not (brain fog, joint pain, rage, sleeplessness). Thanks so much for anything you might be able to share.

Beaverntx

The decreased dose might make the difference you want. I have been on 20mg daily for just over 3 years and have had to take a break twice, each time after 18 months on. This time I am taking 20 mg every other day and the SEs so far are more tolerable and I am sleeping better. It has only been a few months so we will see if the "better" continues. Trying the every other day because I had 20mg tablets left from before the last break and did not want to waste them.

AmusingSoprano

I have had DCIS twice also (same breast, different area), first time surgery and radiation, the second time surgery and Tamoxifen 20mg. I stuck out the Tamoxifen for 6 months before telling my surgeon I wanted to drop the dosage due to side effects. So for the last few months I have been on 10mg and so far have had no obvious side effects. So you too may find that a lower dose works for you. Good luck

DaughterOfBarb

I made the decision to take tamoxifen at a reduced dose of 5mg daily, which my MO supports despite recommending 20mg daily as per guidelines. I’ve only been taking it for a few months and the SEs have been fairly mild and seem to have resolved. Some night sweats and feeling parched/very thirsty at first, but those SEs resolved or greatly diminished after a few weeks. I have always had trouble sleeping and still do, so can’t attribute that to the tamox, though it probably doesn’t help. Iwas worried about hair loss, so started taking biotin. Brain fog is a tough one. I may feel a bit foggy at times, but I can’t say if it’s from the tamox or due to the stress and anxiety of the diagnosis, surgeries, lack of sleep, etc. I hope the lower dose works for you.

Salamandra

If even the lower dose of tamoxifen isn't tolerable, possibly you could try toremifene. That's what I ended up doing.