Breast Cancer Care Forum

Hi, I have been on teva tamoxifen now for 6 & 1/2 years, these are the only ones that agree with me, I have emailed teva, told me that they had been discontinued but 10mg are available for now, don’t know how long, waiting on doctor ring me tomorrow about this, the pharmacist said eventually there will be no teva in any medication, I said it’s a big company, but my opinion is it’s all due to cost, I got put on another brand been on it 5 days been getting really bad cramps and bloating in my stomach and the joint pain is much worse, I know I am lucky enough at having been on them for a few years, but the way I feel if can’t even get the 10mg I’m thinking of stopping.  ... View more

Hi Katiecue That’s a strange one your doctor ring to tell you that you can stop the tamoxifen after 9yrs, obviously they haven’t counted properly! I’m on them to for 10yrs and that’s how long I will be on them, I know a lot of people that can’t tolerate them, I just don’t want to risk the cancer ever coming back, especially being so young. I am 46 now I’ve been on them about 6yrs now. x ... View more

Hi Munchkin, I’ve been on tamoxifen now for a few years, I went through the same, I think it was the 5th cycle of chemo it stopped. Had about 3yrs not having a period, right at the beginning when taking the tamoxifen I was getting those aches to, few months later my periods came back but were only lasting about 3 days at a time, very light. I did think about seeing about it but I wasn’t in any pain, they would come and go a few months at a time, it seems to have stopped now, at one point when they disappeared I thought maybe I was going through the menopause but with them coming and going all the time I think it’s just the tamoxifen doing this to us, if your really worried maybe should get yourself checked, at first I was quite worried because I thought once you start taking the tamoxifen you shouldn’t be having any periods, I’m sure I asked my doctor but didn’t seem to know. ... View more

Hi Alibobs How things change I’m noticing a lot of ladies getting the pre-op nipple injection before there op, when I had mines a few years back I got that done when I got taken to surgery the consultant explained that i would get injected with the blue dye before they start the operation, in a way I’m kind of glad because the thought of that needle going through your nipple being awake and knowing what they would be doing kind of is a bit scary! Especially if anything like me not liking needles, mind you by the end of everything you kind of get use to them. I had to end up getting all my lymph nodes out and just before it all I got told I would be getting a wire put in, I just panicked and got myself into a right state that thankfully didn’t get it done, new exactly were he was having to go. ... View more

Hi ann-m I got told at beginning to that would be on tamoxifen 5yrs & now been changed to 10yrs, I’ve been quite lucky on it a few side affects but not many, stick to the same brand. A few years didn’t have a period and now it comes and goes, you just never know when it’s going to happen, have put on a stone in weight, the flushes were awful at the beginning, get the odd one, sore joints & tiredness, I got a chillow pillow then the magnet to try and help, which it did. I will ask my consultant next time I see him if taking it any longer than 10 yrs is a good thing or not, I know a lot of people are so happy coming of it, I just don’t know how I feel about it when time comes to stop. ... View more

Hi Flashto, Have you ever tried the ladycare magnets? Get them in boots, just make sure your wearing big enough pants! They are good for hot flushes. I was getting lots and at the beginning when was taking tamoxifen couldn’t handle them well because was having to get up change a few times in the night, didn’t have that magnet then but when I went on the Moving Forward Course they were speaking about them there and a few of us laughed because thought how could a magnet do that for you, what you got to watch is if you go shopping and pushing a trolley watch you don’t stick to it! Happened to me a couple of times.x ... View more

Hi Juliewulie, Just a little reassurance try not to feel guilty, we all been through a scary diagnosis, nobody is any worse than you, just maybe some getting less treatment than others. I remember at the beginning I was asking questions but I didn’t really want to know the answer, to me I asked a few daft questions but got told there are no daft questions!!! Since I got diagnosed I have known 5 people after myself and 1 is no longer here, I remember the guilt I felt when she died, it is quite hard picking yourself back up again but you’ve got to do it. Is it the Moving Forward Course you are going to? Because honestly if it is I recommend that to everyone, at the beginning I was so scared but then I needed someone to talk to, that is in the same position as us. I honestly can say it worked a great deal for me. Don’t be so hard on yourself, I’ve kind of learnt that recently, take care.x ... View more

Hi Everyone I remember that day being diagnosed, that horrible feeling inside hearing those words that you’ve got cancer, never did I think would be here to tell the tale, the amount of emotions that runs through you, the beginning was awful, your frightened of everything, was so frightened stayed of the internet, treatment begins, slowly get there never back to normal though! Start getting upset at what’s on tv, a few years passes you start feeling a bit braver then you watch The Real Full Monty and when you start hearing what they say your crying or a sad film comes on you start crying again, but it’s a bit different. It’s good from time to time to let it go. This group is so good everyone all understands each other. Getting a diagnosis does change us, none of us now takes life for granted, onwards and upwards for each and everyone of us, we sure at least deserve that. Try and stay strong.x ... View more

I had breast cancer a few years back and I must admit at the beginning was constantly on my mind from the morning you got up until you went to bed. I was bumping into the wrong people before treatment started, and that always set me back. Every ache had was living in constant fear of it returning or even going somewhere else. I took all the treatment, thought if you take everything offered and it ever comes back you gave it your best. Was off work a long time, but have to say when I got back to work, it was the best thing that could have happened, got my mind of myself and thinking about other people, took a little while but was for the best. I’m not saying you don’t ever worry but it does get less of it being in your mind, at the beginning I did struggle and the breast care nurse got me on a Moving Forward Course which really helped me a lot, meeting with people that were the same as you, understood you better and it was them that always knew what to say to you. The time when I felt quite low was when all your visits to the hospital stopped, I must say though we are all looked after very well, fingers crossed that we all can be cancer free.x ... View more

Oops I forgot to mention chemotherapy how could I ever forget that!!!! ... View more

Hi everyone what a great site this is, when I was first diagnosed I was so scared, i’m A few years down the line now, thankfully all I know mines was her 2, got lumpectomy, lymph nodes removed, couple were cancerous, radiotherapy, herceptin & 10yrs tamoxifen, at the beginning you think there is no hope, but amazing now looking back you think was that really me!! I couldn’t believe all the treatment that you would get, all the nurses and doctors & consultants were amazing, your the one falling apart and they’re the ones lifting you back up again. Having a cancer diagnosis doesn’t half change you big time, getting told this will make you stronger, at the time you don’t see a light at the end of the tunnel, but now there is, you find out who your real friends and family are too, I never take life for granted now, lots of people have helped me and now I would like to help people going through the exact the same. To everyone keep going and stay strong.x ... View more

Hi Tigerfeet, I’m so glad you are asking this because I really don’t know what to think, I’m same age as you, I have been on tamoxifen now for about 5yrs, had chemo, was having periods but stopped I think on the 5th cycle of chemo, I got told chemo could stop your periods completely or they can return, I was put on tamoxifen, was getting the stomach cramps, feeling a little bloated, have put on over a stone. My periods actually stopped for 3 years, but at the beginning the flushes were awful, was having to change a few times during the night, I then decided to try a chillow pillow which did help a little, but throughout day was finding it difficult coping, heard about the lady care magnet, tried that, was great, but then hot flushes started becoming less, then all of a sudden periods returned for a few months and has again stopped, I was trying to keep note of it all and your right it is a bit annoying having to carry pads about all the time, mines to lasts about 3 days, the last one there was a bit longer. I was thinking that I may have been going through the menopause when they actually stopped, but don’t think so now! Can I ask you are you on tamoxifen for 10 years? I still have another 5 years to go. I’m now a bit more tired too but suppose that’s natural! I also find sticking with the same brand helps, I make sure I get the teva brand, there are less side effects I find on them. ... View more

Hi all, Hope you are all sleeping better! I am stil awake they hot flushes is driving me nuts!!! Mines did calm down a bit for 3 years but have come back just like when I first started taking tamoxifen, I am hoping for a miracle cure! I know some foods drinks ect is a main part in it all but it's quite hard trying to give them up! Oh never mind another 5 years to go! Hoping for a miracle cure too for this magnet to work, suppose need to change eating habits. Sorry for rambling on. x ... View more

Hi Meri, Thanks a lot for answering there, you know I have been eating everything, I suppose I better try stop the chocolate, I have reduced the cups of tea and juice, probably all still causing the hot flushes, it's just strange after 3 years having this bother again, just finding it a bit difficult always sweating up all over. In the 3 years thought I might have gone through the menopause but haven't, my period has come back for few months then stopped again, I sometimes kind of hope would come back permanent then the flushes will go, but can't see that happen. I got another 5 years to go, I don't mean to sound I'm moaning it's just they get you down, at the moment I have the magnet on, think I am hoping for a miracle lol!!x ... View more

Hi Welshlady66, I thought I'd answer you, we should be in the tamoxifen section, anyway just to say I do suffer to from joint pain, have you tried changing your brand of tamoxifen? Sometimes that can make the difference and try stick with it, tamoxifen does interfere with your periods mines stopped for 3 years then now and again now come and go but only last couple days at a time, the hot flushes calmed down during then but now I am having them all the time now, I've been hearing about the lady care magnet so thought would try it, if you google it will see what it looks like, I just don't know what to think yet don't think I've had it long enough, you put it inbetween your knickers, it's supposed to reduce the hot flushes and for other things too, even during the night is a bit of a nightmare changing. Also try a chillow pillow I stopped using mines for a while but think I will be getting it out again got that from Amazon and lady care magnet from boots, but honestly do try a change of brand of tamoxifen, see your pharmacist and explain and mind if they say no difference, tell them there are different ingredients in all brands, it might help but I think eventually the hot flushes will be less frequent.x ... View more