Just got to sound off as I am about to finish 5 years of Tam with SEs causing sleepless nights. Should have finished Tam on Monday but my surgeon has not written the letter to my GP yet, it’s on his to do list! I was OK about the hot sweats until the goal posts got moved, now I am pretty depressed. I know it’s only going to be a matter of days and I should be happy I have kicked the cancer but it still brings me down. I guess I just have to wait for the snail mail, and keep taking the tablets!
Hello Janet
Why did they extend Tamoxifen with you, I thought 5 years was the norm?
I am now on Letrozole after 5 years on Tamoxifen, thought I was on Letrozole for 3 years and was told this year its now 5 years.
Hazel
I was told I’d be on Tamoxifen for two years, then switch to an aromatase inhibitor. Don’t know how long I’ll be on the AI.
Sarah
Hi Hazel,
The only reason they have extended the Tam date is because my surgeon hasn’t written the letter to my GP yet, I have been waiting since my last appt with him on the 26 September. My GP has faxed him and tried to ring but still no letter.
Jan x
I will be 5 years next Nov. I asked my guy what would we do then?
He said a paper was due out this year which, dependant on findings, would see me being kept on it longer than the customary 5 years. We’ll see.
blessing
Hi Blessing,
Eeeek, moving the goalposts again! Well good news here, the Breast Care nurse has just rung to say the letter has been typed and I can stop taking the Tamoxifen as of the end of October, so am now Tam free, hurrah. I hope they don’t extend your time on it.
Jan x
Hi,
I was initially told that I would be on Tamoxifen for 5 years (back in November 2002.)
Since then my Onc has advised that it will be for 10 years
so I have another year to go yet.
As I remain NED, I have to go with his advice and put up with it for a bit longer!
Strange how advice differs.
Best wishes x
Hello
Thats good news, are you going to go onto anything else?
The reason why I say that is that I heard and I can’t remember who told me but that if you have problems with Tamoxifen you might be okay on AIs or visa versa which is true for me. I’m okay on Tamoxifen but not getting on at all with Letrozole.
Hazel
Hi
No they are not putting me on anything else, as far as I know.
It is demoralising when they keep moving everyone’s goalposts.
Jan x
Hi Al
Its all SO confusing! I finished Tamoxifen in June after 5 years. I asked to stay on it for longer and Onc said "No - there is no benefit and it raises the risk of endometrial cancer and DVT according to latest research!! " I wanted to stay on it!! Why are we all told different things??! Grrrrr!!
Love ALise x
Hi ladies. I am due to finish five years of tan next august. Just wondered if anyone experienced any problems when coming off. Star of the ball xx
Hi Alise and Star of the ball,
Alise, my first guy confirmed what you had said re DVT and Endo cancer increased risks… but he said these applied to post menopausal women. I wonder if the paper being released this year will take these risk factors into consideration when they publish?
My present guy, when I asked said, the problem was SEs worsened with extended use. I cant say this applies to me over 4 years. SEs kicked in quite soon and are at the same level now…they come in waves.
As for coming off. I have had 3 breaks from the drug due to surgeries. I have been consistently been told, stop 2 weeks before and resume 2 weeks after. It is to lessen risk of clots. I start feeling the non SE stage at about 1.5 weeks. I kick into them again, similarly.
Ive enjoyed not having leg/feet cramps and sweats at night, but hey ho, I hang onto the stat I was given as a 50% drop in reaccurance whilst on them.
I turned the heating down last night before I went to bed, I think it may have helped as didnt have too bad a sweat. I think 1 or 2 degrees really helps me. OH doesnt mind as he’s a right skin flint with the heating bills!
Love and empathy
Blessing
Interesting… I have had three lots of surgery for my reconstruction, and was never told to come off tamoxifen.