I started taking Tamoxifen tablets in October 2017 and didn’t notice many side effects initially, except that I was having trouble sleeping with the tablets. This was very annoying for someone who looooooooves to sleep!
After a couple of months, my sleep returned to normal, with the exception that I have some seriously crazy nightmares around 2-3 times per week. This isn’t a normal side effect from Tamoxifen but I am maybe more susceptible to it as I occasionally had crazy nightmares before starting Tamoxifen (maybe 1 every few months).
I started to notice proper side effects from the Tamoxifen in May 2018. The side effects for me included:
- Spatial awareness – bumping into stuff
- Heart Palpitations
- Hot/cold sweats
- Trouble sleeping
- Super tired
- Scaley hands / swollen hands
- Dry eyes
Whilst this is quite a lengthy list of side effects, they are sporadic, not all at once and don’t really bother me too much. What does bother me about the Tamoxifen is that I just don’t really feel like myself whilst on the medicine. It’s hard to explain but sometimes it feels like I am temporarily borrowing someone else’s body who is way more emotional than me….I will cry at anything! A bit of dizziness, or lack of sleep I can deal with, but not feeling like myself is a bit of a deal-breaker for me. Whilst this is a little frustrating for me, I know that my side effects are not as bad as some other people – they literally change personalities and become different people.
I was recommended to take Tamoxifen for 10 years. The recommendation was initially to take the medicine for 5 years but studies have since shown that 10 years of Tamoxifen is more beneficial for the cancer not returning. 10 years sounded like such a long time that I initially was thinking I would commit to 2 years and then take it from there. I am now aiming to get to one year of Tamoxifen and if the side effects stay as-is, then I will aim for another 6 months after that.
At this point, the Herceptin will be clear from my system so that my husband and I can start to think about whether we would like to try and expand our family. If we decide against this, then I will set another short-term milestone and aim to carry on Tamoxifen for another 6 months to a year and re-evaluate again at that point.