give up tamoxifen ??
give up tamoxifen ?? Hi
Not been on for a while been feeling really fed up and very confused. I have beenon tamoxifen since dec 05 and just keep putting weight on even though i go to the gym 4 nights a week, on top of that i still feel very tired and i ache in my breast and hips ! My onc said that these are just a few of the side effects, on reading the leaflet you get with tamoxifen it goes on about dvt and other cancers later on in life afer you have finished taking it. My question to anyone is , is it worth it i know i should be happy that i am still here but i just want my life back i want to be in charge again.
as anyone thought of stopping? is this a risk ? does the risk of taking tamoxifen outway not taking it ??
Vodkasue
Hi Vodkasue Hi
I’ve been on tamoxifen since Feb 05 and I feel lousy on it. The tiredness is the bit that really gets me down. I can only drive short distances as I get sleepy and I just don’t feel safe. Anything over half an hour is a problem. I itch from top to toe, I feel nauseous, headachey, fat, as if I am coming down with flu, horrible night sweats - I could go on…
I have been backwards and forwards to my GP and oncologist trying to resolve the problems. My oncologist has told me that I can either take tamoxifen and put up with the problems or stop taking it and have an increased risk of recurrence.
At the moment I am sticking with it - I would (rightly or wrongly!) blame myself if I came off it and then got a recurrence. At the moment I feel I want to do my best to stop that happening. This is just how I feel at the moment - I may well change my mind as my quality of life isn’t the same as it used to be.
A few things that have helped - taking it in the evening after supper has lessened the headache and fluey type problems. Not missing meals has helped the nausea - tend to carry biscuits around with me nowadays.
I take aspirin to counteract the increased risk of DVT (I also have blood that is more likely to clot so I have to be careful).
I have just asked my Dr to switch me to NOlvadex-D (“brand” name of tamoxifen) - different brands have different filler ingredients added to the basic tamoxifen. This has helped the itching quite a bit.
I hope this has helped you a bit - it’s not easy to decide what to do, is it?
Best Wishes
bjj xx
Could you change? Could either of you change to Arimidex? This would mean your treatment is a lot more expensive and your doctors may not even approve, but after two years on Tamoxifen with bad side effects I was switched to Arimidex, and felt so much better. Have now finished all treatment and am well.
I know the protocol now is most often two years of Tamoxifen and three of Arimidex, but if you really can’t tolerate Tamoxifen it would be worth asking about it. The benefits of both treatments are proven to prevent recurrence in the majority of cases now I believe.
Good luck with your decision - but I am proof there is light at the end!
Hi there I also suffered lots of problems with Tamoxifen (started Dec 2004) and changed to Nolvaldex D and it has helped with some of the symptoms. I take it as I go to bed and so far have avoided too many hot sweats. I also put weight on but I am slowly (very) getting some of this off. I have followed the weight watchers diet - did go to the club but did not feel very comfortable as struggled to loose weight weekly.
DVT’s are common for lots of things and taking asprin is the best for this. I flew to Bali 3 months following my mastectomy & recon with my consultants blessing on Tamoxifen and asprin. You just have to be sensible and move around. My mum got a DVT out of the blue following a flight to Spain!!!
It is difficult to know what to do and I suppose you need to decide if you could live with the risk of reoccurance. I couldn’t. It is hard and I still want my life back. I had my op Sept 2004 and it has took its toll in the last 6 months rather than earlier. Hang in there, I know it is hard but think how far you have come. The best thing I did was went on the 2 day Living After Breast Cancer course that Breast Cancer Care ran (only last week) and I feel I can start to cope a bit more and move on with things. I learnt so much and met a group of wonderful people all of who are in the same boat as you and you suddenly think you are not going mad or totally alone.
Take care of yourself and see if changing to Nolvaldex helps.
Debx
Tamoxifen Hi Vodkasue - not sure if you interested in my view as I am a man but I was having the same problems as yourself - weight gain aches n pains - hips and shoulders mainly - but all joints - feeling tired all the time.
I started Tamoxifen in June 2004 - I aked to stop after taking it for 6 or 7 months - fed up with feeling crap all the time - I was told that if I could get to 2 years then it would be reveiwed. In June this year I stopped taking the damn Tamoxifen - cant believe how different I feel, within just a short time - they say it takes about 6 months to leave your system - so by Christmas this year, should feel much better.
I had a full mastectomy to my right side - 6 sessions of Chemo and 25 sessions of Radio - Tamoxifen for 2 years.
I now take nothing - no drugs what so ever - I hope I can last without taking anything from now on - so far so good - but we are all different - what is good for one may not be good for others.
good luck and I hope all works out for you
David W
Difficult question Hello Vodkasue
I have been taking Tamoxifen since last December same as you and I don’t feel like me at all, can’t think of another way to describe it. I have aching joints, haven’t put weight on in fact I’ve lost nearly a stone but my confidence has gone and as you put it don’t feel in charge.
A couple of months ago when I was feeling low I called my breast care nurse and explained how I felt, she said to leave it off for a month and see what difference it made. Well I stopped taking it for 3 days I think before I had a guilt trip, my cancer was a recurrence after 20 years, and I often wonder if Tamoxifen had been around then would I have had this recurrence, obviously something I will never know. I do know though that if I don’t take the dam things and it does come back again I will blame myself.
Its difficult I know, 5 years is a long time and who knows exactly what benefits we actually get from them, some more than others I suspect.
Take care.
Jan
Hi I’ve been on Tamoxifen for 3.5 years and I too have put on loads of weight and I’m tired all the time. However I’m sticking with it to maximise my chances of staving off a recurrence.
I do wonder (being 54) whether the effects I’m suffering are ones I would have had anyway going through the menopause, since my sister who is a year younger and so far bc-free is also tired all the time (but eats very little, so is very slim).
thank you thank you for all replys, including David ! Glad you are feeling better.
It seams that not all people have to have 5 years of drugs thats confusing why some do and some dont. I know I am being reviewed in at the end of the 2 years, but it seams like a long time.
I suppose when I look back at when I was Diagnosed I just kept telling myself in I years time it will all be over but I was so wrong.
Talking to you all helps to feel that you are not alone and what you feel is, dare I say it normal !!
Still not sure what to do perhaps plod on for a while longer I am due to see the onc soon will ask about a swop.
Thanks again
Vodkasue
Tamoxifen Hi everyone,
I can really sympathise with you all having a bad time on Tamoxifen. I have felt crap since I started taking it back in March. I feel like I’ve aged 10 years, I’ve slowed down a lot and finding everything more of an effort. I’ve had terrible hot flushes not helped by the hot weather that we’ve been having. I’m more forgetful can’t remember names. I honestly feel as if I’m in a permanant fog all the time. My consentration has gone to pot. The tiredness is the worst I can’t seem to shake it off. I agree with what you all say that I don’t feel the same person any more. With everything else that has gone on this year I felt quite low so I started taking St Johns Wort. Then after I’d been taking it a couple of months I found out that it can make Tamoxifen less effective so had to stop taking it.
I don’t know what to do to help with the symptons. Because my cancer was oestrogen positive I can’t take any supplements, food or drink with soya in as they contain plant oestogens and I’ve been advised not to take them. HELP!
I asked my consultant about changing pills but he said that if I took another brand I would still suffer the same symptons!
Going by what a lot of you say it seems we have to suffer in silence while on this drug or come of it and risk the cancer coming back,
Take care all of you, and I hope that you manage to find some relief from your symptons,
love Cynthia x