hii 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.

Bit 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 inhubitorsto 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 withbi 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 andmacular 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 theirfavourite prescriptions. The oncs should consider yourHistology Report, do a risk assessment for recurrence, and monitor the effectswhile 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..

Hi Ladies, I have been on Tamoxifen consistently for 10 years with no breaks.. I can have been told by my oncologist that I can stop in Feb 2020. I am after some advice as to 'what its like on the other side'... I have been on the drug for so long I am unsure what to expect when I stop 'cold turkey'.... thoughts? xxxxx

@kezmusc I’m very interested to see how it goes. Will probably keep a little diary of the side effects that disappear.

Hi @Milly21 ,I believe I am the Tamoxifen break queen lol. Actually I am 11 days into another break at the moment and starting to feel normal again. Normal is such a buzz. I take a three week break every three/4 months. It's the only way I can take the darn thing at all and not completely feel like crap all the time. My first two breaks the side effects went after a few days. The last couple though have taken about 10-12 days to get back to reasonably normal (I have been on it about 17months now). The side effects are just the same going back on no worse. I am a bit worried that it is taking longer for the SE's to go and that one day they won't. xoxoxox

The worst part is when the oncology registrar says "oh no those side effects are not from Tamoxifen, you are the only one reporting that constipation is a problem." Also endometrial changes and discharge are not from Tamoxifen, then when referred for Gyne consults the consultant says, this are from Tamoxifen 100%. Also interesting when you cease Tamoxifen, constipation vanishes and discharge stops. I will have another break after cutting dose down to half, symptoms lessen. It is nice to be heard that the side effects are not imagined.

Tamoxifen break | Online Network

17 Replies

kezmusc
Member
6 years ago
Copy Link
Hi @Milly21 ,

I believe I am the Tamoxifen break queen lol. Actually I am 11 days into another break at the moment and starting to feel normal again. Normal is such a buzz.
I take a three week break every three/4 months. It's the only way I can take the darn thing at all and not completely feel like crap all the time.
My first two breaks the side effects went after a few days. The last couple though have taken about 10-12 days to get back to reasonably normal (I have been on it about 17months now). The side effects are just the same going back on no worse. I am a bit worried that it is taking longer for the SE's to go and that one day they won't.

xoxoxox
iserbrown
Member
6 years ago
Copy Link
I have a friend who has just completed 7 years on tamoxifen. Like some it hasn't been all smooth sailing but the point to this tale is he has let her free. No need to continue on it! No more! She's pretty happy about that!

We all look forward to that moment!

Take care
Emma
Member
6 years ago
Copy Link
Hi Ladies,

I have been on Tamoxifen consistently for 10 years with no breaks.. I can have been told by my oncologist that I can stop in Feb 2020. I am after some advice as to 'what its like on the other side'... I have been on the drug for so long I am unsure what to expect when I stop 'cold turkey'.... thoughts? xxxxx
Cassina
Member
6 years ago
Copy Link
The worst part is when the oncology registrar says "oh no those side effects are not from Tamoxifen, you are the only one reporting that constipation is a problem." Also endometrial changes and discharge are not from Tamoxifen, then when referred for Gyne consults the consultant says, this are from Tamoxifen 100%. Also interesting when you cease Tamoxifen, constipation vanishes and discharge stops. I will have another break after cutting dose down to half, symptoms lessen. It is nice to be heard that the side effects are not imagined.
iserbrown
Member
6 years ago
Copy Link
Hi sorry to read that the Oncology Registrar was dismissive about your symptoms. For me the moment I spoke of gynaecology change my Medical Oncologist referred me to a Gynaecology Oncologist.
For me Uterine Cancer became an issue however after a couple of years of Tamoxifen induced issues and treatment that issue has subsided, hopefully not to return.
If you have doubts always question or follow through with your breast care nurse. Our bodies are rebelling! Who'd thought that breast cancer could be so complicated as we navigate our symptoms, terminology, treatment et cetera
Take care
Kiwi_Angel
Member
6 years ago
Copy Link
I start my 6 week break at the end of this month with the blessing of my oncologist
kmakm
Member
6 years ago
Copy Link
@iserbrown IKR? I mean, I knew medical treatment was complex, but this level of complexity for something that is so common took me by surprise. Occasionally I have a friend who is interested to hear details of my condition. Without fail they say they had no idea, and marvel at my depth of knowledge. And I don't think I know nearly as much as many of the people here! You really can become quite expert in your own condition. Which makes it very frustrating when you come across a doctor saying something that you know with certainty is not right. Sigh...
arpie
Member
6 years ago
Copy Link
I hope the side effects lessen asap & you enjoy your break @"Kiwi Angel" xx
Kiwi_Angel
Member
6 years ago
Copy Link
@arpie thanks hon. I’m very interested to see how I will feel!!
kezmusc
Member
6 years ago
Copy Link
Congrats @"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.