Forum Discussion
Milly21
7 years agoMember
Tamoxifen break
hi
i have appointment with my oncologist this week and thinking of asking for a break from taking tamoxifen,wondering if others have done this,how long for,is it worth it or is it harder for body to adjust when start to take again,I have been on it for 2 years now and 2 months. Did they feel better having a break? I feel like my body struggling with it at moment.
i have appointment with my oncologist this week and thinking of asking for a break from taking tamoxifen,wondering if others have done this,how long for,is it worth it or is it harder for body to adjust when start to take again,I have been on it for 2 years now and 2 months. Did they feel better having a break? I feel like my body struggling with it at moment.
17 Replies
- EAAMemberBit late to this thread but I found in the end I couldn’t function onTamoxifen The fatigue was enormous. My brain was constantly
alseep., like chemo brain fog.. daily, I tried to continue and work against it until I found another Onc and asked to return to Arimidex,
one of the AI group. I got my brain back and apart from a few jointy issues, I My activities go quite well.
I woukd be asking your Onc what your tumour pathology was and is there another drug available.
A major unwanted effect of Tamoxifen, denied by both oncs and unknown by some eye specialists, is cataracts. Aromatase inhubitors
to a lesser extent. The US literature is very explicit.
If continuing especially Tamoxifen do have regular eye checks.
Ten years ago, prior to starting chemo for my first tumour, my
opthalmologist said my eyes were in good health.. Now, 10 years and a missed second tumour later, my sight is compromised with
bi lateral cataracts and refractive disorders. The cataracts can be
Remedied. But the refraction is another challenge with the development of corneal ‘ things’ due to dry eyes from the drugs and
macular changes. No wonder I want to upgrade all my tech stuff as the screens getter duller and the fonts blurr as I reach for a magnifying glass! Prolia too , given with Arimidex has also had its
consequence post cataract surgery with increased inflammation.
the issue is not about not taking Endocrine therapy but being properly monitored with a detailed care plan for any side effects that can be addressed early in therapy. Endocrine therapy now has choices of dugs to choose from. One favoured drug does not always fit all and the oncs in spite of best practice and knowledge have their
favourite prescriptions. The oncs should consider yourHistology Report, do a risk assessment for recurrence, and monitor the effects
while you’re on the drug.
After this long winded rant... All the best.. Take a family member or
friend to your next appointment and be bold... to speak up..
Suffering can be diminished without compromising care.. - Kiwi_AngelMember@iserbrown thanks
- iserbrownMemberBest wishes for your break! Hopefully it's a worthy exercise
Take care - Kiwi_AngelMember@kezmusc I’m very interested to see how it goes. Will probably keep a little diary of the side effects that disappear.
- CassinaMemberThanks Arpie, very interesting and I am sure not everyone gets all of these, but just like to be acknowledged that you are not alone!
- arpieMember@Cassina - this is the chart that @kezmusc mentioned in the post above ...... it includes the various 'names' for most of the most used Hormone tablets - and also a description of how they work, as they are in different 'groups'. I am on my 3rd lot of AI tablets now as the first two gave me severe side effects. Tamoxifen is about the only one I haven't used at this point! LOL
The 'x' on the chart are 'added side effects' from members - previously not noted on the chart. The 'dots' are the original side effects.
Please note - NOT EVERYONE gets any or all of the symptoms - so try not to worry about it too much!
It DOES have Constipation for Tamoxifen and another member had the same with Femara/Letrozole - so you are definitely NOT the only one who has ever had it!! For it to make the original list, it would have needed many cases to be identified.
Print this chart off (2 copies) - one for you & one for your Onc!! They obviously need some education in side effects!! - CassinaMemberExactly, and interesting when you reduce the dose or have a break symptoms vanish! I agree not everything is from this medication but like hearing from others on effects. Scary really
- kezmuscMemberCongrats @"Kiwi Angel". You're gonna love it. Normality aaahhhhh. Just wait for your libido to kick back in. Fun times LOL
@Cassina seriously, there is a lot of "no, that's not from Tamoxifen, you are making it up. You are the only one, you are overexagerating, it's all in your head" going on. FFS. If they'd just lift their head out of the "listed side effects" page and have a look on line at the forums and facebook page they would see a hell of a lot of people "over exagerating and making things up".
https://www.webmd.com/breast-cancer/news/20161209/tamoxifen-may-get-blamed-for-unrelated-symptoms Have a look at this one to really get pissed off.
Naturally occuring nausea......faaark, every day three of four times a day long term?????????????????????? Tell your doctor if the symptoms don't stop, why? what for? to be fobbed off and told you don't know what you are talking about. - Kiwi_AngelMember@arpie thanks hon. I’m very interested to see how I will feel!!
- arpieMemberI hope the side effects lessen asap & you enjoy your break @"Kiwi Angel" xx