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Starting tamoxifen - sharing advice and thoughts

7 REPLIES 7
CyclingMad
Member

Re: Starting tamoxifen - sharing advice and thoughts

I also felt very wobbly the first day of radio.  The first one is the worst, just becuase you don't know what's happening.  It's very straightforward and it doesn't worry me at all now.

Charys
Community Champion

Re: Starting tamoxifen - sharing advice and thoughts

I knoooowww, I had two halves of them...then freaked out. Ignore me....it's a phobia/ paranoia thing which I will get over any moment......lol

 

xxx

Jobey68
Member

Re: Starting tamoxifen - sharing advice and thoughts

Charys honestly you are not likely to experience any hideous side effects, I know some do but that the small minority, the majority of us don't and it's not going to hit you suddenly it's a gradual build up and you just kind of get used to feeling a bit light headed at times and having the odd flush, it's nothing awful and it's for a very good reason after all! Good luck for start of rads tomorrow, I'm sure you will find it an anticlimax after all the build up, I did! I said I expected flashing lights and something more dramatic so on my last day they played me the Star Wars theme tune!! 😜

ann-m
Community Champion

Re: Starting tamoxifen - sharing advice and thoughts

too right, jobey !
ann
x
Jobey68
Member

Re: Starting tamoxifen - sharing advice and thoughts

I've been on Tamoxifen for 14 months now and still enjoy a tipple when ever I please, I try not to worry about what may be too much, I'm healthy,eat well and exercise daily and believe being happy goes a long way so my advice is don't fret over every thing you read, be sensible of course but enjoy life! Xx Jo 

Charys
Community Champion

Re: Starting tamoxifen - sharing advice and thoughts

Hiyer,

 

 

I ve come here to bookmark this thread, as I hope to be able to share thoughts and experiences with you guys as we go along. RT starting tomorrow, I SHOULD have already started tamoxifen last week.....but wobbly in the extreme and scared of side effects ( with a few major life events thrown in which have made it psychologically tricky). I intend to start now the week after RT, 

Alcohol isn't an issue for me as I have been teetotal for many years, but the blood issues do concern me greatly and my oncologist was entirely lacking information about things to monitor etc. Actually, she literally said ' the go will give you a script for tamoxifen' and that was the sum total of the discussion. C x
ann-m
Community Champion

Re: Starting tamoxifen - sharing advice and thoughts

hi cyclingmad, having finished rads nearly 2 weeks ago, I have been in tamoxifen since then, like you I was apprehensive about it. So far it's been better than I expected .
I am peri-menopausal & was having hot flushes anyway & to date, it's not been troublesome. So see what happens over the coming weeks.
There has been quite a lot reported recently about low dose aspirin & tamoxifen in respect of bc as well as cardiovascular blood clotting issues, I intend to clarify whether it's worth taking low dose aspirin as well when I see the onc in July.
As for alcohol, well I think my moderate wine habit will continue!
ann
CyclingMad
Member

Starting tamoxifen - sharing advice and thoughts

Hello, I'm new to this forum.  Have had a mastectomy, just about to complete radiotherapy tomorrow (hooray!) and start tamoxifen on Thursday (...) as my cancers are oestrogen and progesterone receptive.  I was quite happy about this, to reduce future risk (even though my cancer was stage 1), but having read some of the side effects, I am getting a little concerned.  My oncologist (male) seemed completely oblivious to any concerns about menopausal symptoms.  Having heard from someone in their 50's on tamoxifen who has just had a stroke, and my mum having recently had her 3rd stroke, I am a bit worried.  I believe my oncologist about my risk of cancer recurrence on tamoxifen being reduced significantly and this being a good reason to take it.  I just want to be more educated on risks of side effects.

 

Happy to hear everyone's experiences so far, both recent and years on.

 

I've also read a scientific paper about the effect of alcohol on tamoxifen (not a great mixture - my understanding is that it greatly reduces the effectiveness of tamoxifen), I am looking for advice (here and from my oncologist and pharmacist) on whether to cut out alcohol apart from birthdays and special occasions or just limit to one drink a week.  [If you're interested in the paper, which seems to be a reputable source, you can find it here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4681367/ ]