Helloi am 4 year survivor and have been on tamoxifen the four years.i am fed up with flushes, feeling like utter crap, NO libido (can’t remember what intimacy with my husband feels like) mood swings and generally just over life.unfortunately I also have rheumatoid arthritis and type 1 diabetes so completely over medications.i am considering stopping the tamoxifen. Haven’t spoken with the Oncologist about this and don’t intend on doing so. I am making the choice for me and my sanity.i cannot remember what a good uninterrupted sleep is like. I am at the point of if the cancer comes back so be it. Can anyone please tell me if there is anything I should be concerned about from just stopping tamoxifen. Thanks

Dear JacquiPNo-one can make you stay on medication, particularly when you have really unpleasant side effects. But your oncologist can advise on stopping cold or weaning off (I haven’t taken tamoxifen, I am on an AI so I can’t advise) and also if there may be any temporary side effects from stopping - just so you know. He/she may of course try and get you to persist but with potentially another six years to go, that’s not his/her problem, it’s yours and you are the one to decide. Best wishes.

Hi @JacquiP - so sorry the Tamoxifen is giving you so much grief. Have you tried any of the other Hormone Tablets? I started on Letrozole, then went to Exemesatane and now on Arimidex! Matter of fact, Tamoxifen is the only one I HAVEN'T been on! See if you can have a break from the Tamoxifen & maybe your onc will let you try one of the others (I am doing fine on Arimidex.) Or maybe ask if you can reduce the amount - maybe take it every 2nd day? On the theory that anything is better than taking none?All the best, good luck xx

Hi @JacquiP, I too have rheumatoid arthritis and was put on Tamoxifen. I found the increased joint pain just way too much to cope with so my onc agreed that stopping it was best for me. I was peri-menopausal so I had an oophrectomy and, after I've had a knee replacement in August, I'll give Exemestane a go. If it doesn't work, I'll stop it and try something else.I've found that being very clear with my medical professionals that quality of life is more important to me than quantity, has resulted in some really good outcomes. The ortho I saw about my knees wasn't keen to give a 41 year old a replacement but after explaining my position clearly (and looking at the MRI's), he got on board the "Make Jen's life better" train :) I'd really recommend this approach and if your doc isn't prepared to get on board, see if you there's another one that will!

Hi @JacquiP I sympathise with you lovely. It's been difficult for me to persevere with it and I am not even three years in. I managed the sleep issue by changing brands which also tamed the hot flushes down a bit as well. The nausea, bone aches and light headedness remain, though not as bad. Love life..........well, tha's a very sad side effect of all this shit. I run three months on Tamox and one month off. At the beginning it would wear off quickly and I would have three really good weeks. Now it's taking nearly the whole month to notice any difference. This time I have extended my break to 6 weeks. There appears to be no problem side effects with me just stopping it regularly. Sometimes the flushes will increase for a couple of days as my body tries to work out what the heck I am doing to it now. My onc knows what I am doing and agrees, it's better than not doing anything. Not that I think they really care once you walk out the door. It's a difficult call for a maybe. I have tried to explain this to my husband but I don't think it gets through that it's no guarantee anyway. . To be very honest the only reason I continue is because of my family at this point. Left to my own devices it would a resounding hell no. Good luck with your decision sweet. xoxoxo

So many seem to tut in disbelief at the stupidity of women who choose to stop meds. For those of us who struggle with it, and there's a lot of us, the pain is very real. And as @kezmusc says - there's no guarantee that we need it and no guarantee that it'll help if we do. I've been on it now for nearly 2 years and most of that time it's been hell - I'll probably be on it for at least another 8 years. My onc would give me a break but would prefer not to at this early stage. The good oil makes the pain manageable but of course, we're not supposed to have that. I think that I would be very likely to stop if it wasn't for my kids but having them, I will take whatever possibility the meds provide. Only you can make the decision as to how you go on but you have to think about it carefully and clearly. No regrets.

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arpie
Member
5 years ago
Hi @JacquiP - so sorry the Tamoxifen is giving you so much grief. Have you tried any of the other Hormone Tablets? I started on Letrozole, then went to Exemesatane and now on Arimidex! Matter of fact, Tamoxifen is the only one I HAVEN'T been on!

See if you can have a break from the Tamoxifen & maybe your onc will let you try one of the others (I am doing fine on Arimidex.) Or maybe ask if you can reduce the amount - maybe take it every 2nd day? On the theory that anything is better than taking none?

All the best, good luck xx
iserbrown
Member
5 years ago
@JacquiP
Sorry to read you are having such a hard time, physically and emotionally with tamoxifen. If it was me I would consider an appointment with the Oncologist to ask what are your alternatives as tamoxifen is not agreeing with you at all. Is it possible that it is at odds with your other meds?
You could ask if you could have a break from Tamoxifen.
If nothing else it will give you a clear indication of what your % is for taking or not taking.
Take care and best wishes
There's no right or wrong answer it is what is best for you

BTW The BCNA website is a great resource for understanding and formulating questions. There's a multitude of booklets - have you been given the Hormone Therapy booklet?

https://www.bcna.org.au/resources/booklets-and-fact-sheets/#hormonetherapy
Afraser
Member
5 years ago
Dear JacquiP
No-one can make you stay on medication, particularly when you have really unpleasant side effects. But your oncologist can advise on stopping cold or weaning off (I haven’t taken tamoxifen, I am on an AI so I can’t advise) and also if there may be any temporary side effects from stopping - just so you know. He/she may of course try and get you to persist but with potentially another six years to go, that’s not his/her problem, it’s yours and you are the one to decide. Best wishes.

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