22-06-2018 07:07 PM
When I was first diagnosed just over 2 years ago, I initially was told 5 years, then it was changed to 10 years, so it probably came in generally, at around that time. It was based on research that found reduced recurrance rates if hormone treatment was continued to 10 years. I was also told that it may go up to 15 years!
If you would prefer to continue, it maybe worth talikng to your team or GP about it.
22-06-2018 06:01 PM
Why were some patients told 5yrs on Tamoxifin and other 10yrs? I was dx in 2013 I was told 5 yrs but i'm noticing some ladies on here did the 10yrs being dx prior to 2013. Just curious to see if anyone know. Seems the Dr's don't they're just going by studies. Now I know most recent dx ladies will be told 10 yrs because that's what they are saying now. But us ladies from earlier dx we were told 5yrs nothing else, no possibility of staying on 10 or longer at least not me.
22-06-2018 05:48 PM - edited 22-06-2018 05:50 PM
That's @Victoria16 good to hear that your body is now adjusting, and most of of all losing weight. This make me feel at ease as i'm looking at ending 5 yrs in April. But i'm not sure about getting that period again, however i'm 52 now my dr said tamoxifin may have blocked it for good. I hope so. lol
21-06-2018 02:57 PM
21-06-2018 08:15 AM
21-06-2018 01:07 AM
Just wanted to say.. hang in there.. i felt same way after suddenly stopping 9 yr. therapy. That was end of January , this year. I now feel so , so much better being off tamoxifen.. i thanked it for what it helped in my body, but was happy to bid it farewell. I feel much healthier ( altogether feeling way better in all areas)... i pray you will as well.
Best wishes to you.... <3
20-06-2018 10:10 PM
13-06-2018 06:10 PM
Yes I believe so. I'm hoping things will settle down as time goes on. It's because it's so unusual for me and coincides with the reduction. Never seem to find any decent info on reducing the dose so hoping this forum might find others in the same situation.
13-06-2018 08:25 AM
My first time on this Forum. I've been on Tamoxifen for almost ten years. I'm due to come off in 2019, I've found the side effects bearable and gave up visiting my G.P as always had more drugs thrown at me and not much understanding. I was diagnosed with Invasive Lobular Carcinoma so considered it important to take the drug. I've asked to have my prescription reduced now to 10 mg to prepare my body for stopping in September 2019. Im finding the reduction hard as I've become a monster. Im sad/ indifferent to everything. Even writing the word sad has bought tears to my eyes. Not normally an emotional person. Anyone else out the with similar??
12-06-2018 09:55 PM
Is there anyone on here who can testify that they went off tamoxifin after 5+ yrs and was fine? It's nice to hear some positive messges. I'm almost to my five years and i'm still on the fence. My time on tamoxifin has been fairly good. I had non to little side effects which was hot flashes which eased up now, and occassional cramping in legs or arms, oh yea brain fog. Anything else that i have seen or read i haven't experienced it. Now i know like most medication when you go off your body has to adjust to not being on it, so there may be some changes. I do believe it should be weened off instead of just a sudden stop. Just like taking predisone you start off small dosage to max amount, then you work your way back down to small dosage when it's time to ween off.
04-06-2018 05:19 PM
28-05-2018 03:08 PM
I have been taking Tamoxifen for 2 years. The side effects have been awful. I too, am thinking of coming off the drug. I am just worried what will happen if I do.
I am 53yrs old and I was was in the peri-menopause when I was diagnosed. Since taking tamoxifen my periods stopped, awful hot flushes and sweats started. Then joint pain, terrible skin and nails. In the past month my gums and corners of my mouth have been sore. I’m off to the dentist to get it checked, but believe this is also a side effect.
l’m lucky that I only needed a lumpectomy and radiotherapy. I certainly didn’t think taking Tamoxifen would be so awful and make you feel so miserable sometimes. I tried acupuncture with good results. Unfortunately at £50 a go I could not afford to keep going.
Good of luck to all x
28-05-2018 10:28 AM
DCIS, oopherectomy, hysterectomy, chemo, radio, lumpectomy. Initially dx late 2009 (breast cancer). I research frequently, and I'm staying on Arimidex (Anestrosal). It's not fun, but it does get easier over the yrs. I really would love to get off this drug as it's starting to seriously impact on my body (hot flashes have eased slightly, but other symptoms, definetly worsened) I'm sure you probably feel the same- bugger any pain, I just want best options for survival!