Breast Cancer Now Forum

Hi Gillian I've been taking tamoxifen for just over 5 years now and was also advised this year to continue taking for another 5 years. I'm a little younger at 47 and haven't gone through menopause. My tumour was also grade 2 but larger and had spread to lymph nodes so even though they recently said I'd not had an extremely high hormone positive response, I still feel ok taking it for longer. They talked about doing a test after a year to see if I'd started the menopause and if that was the case they'd suggest I switched to an alternative. Worth noting, that in the US, I've been told that 10yrs on tamoxifen is the norm. Another thing worth mentioning - have you tried different manufacturers of tamoxifen as I've found some have less side effects that others. Suspect you have if you've taken for 5 yrs but thought it worth a mention. Hope that helps Sarah ... View more

Hi, I've been taking tamoxifen for over 5 years now ( will be taking for a further 5 years also) and have found side effects have varied depending on the manufacturer. I was given APS for a very long time and all was fine but since last summer have been given 3-4 other brands. Started a new one last week and ever since have had stomach aches/discomfort so my surgery is now ordering from a previously used manufacturer that I know should be relatively ok. I've also often found that when I've had to switch , I've felt nauseous for the first week of use. On a positive note though, I've never had a weight loss problem while taking tamoxifen and have lost the 1-2 stone I put on during chemo/ rads. Hope that's helpful to anyone just starting out on tamoxifen. ... View more

Hi - I put on a stone and a half within 6 months of diagnosis while having chemo and a masectomy. Started taking tamoxifen in January but at the same time I did start to try and lose waight, and have managed to lose just over a stone. I have a real sweet tooth so I just try and limit cakes/chocolate but have also cut back on cheese in a big way. Still have milk and yoghurt though. Otherwise, I've just been trying to lose the weight slowly and not worrying too much if we've had a meal out or if I've over-indulged! I don't do any regular exercise and work full time so am stuck at a desk most of the day, but my 5 year old daughter keeps me active at weekends - I think that helps. Good luck to all those trying hard to lose the weight - stick with it!! ... View more

Hi - I was told by my consultant that I should still use contraception whilst on Tamoxifen even if I wasn't having periods as I could still become pregnant. I'm 41 and so pre-menopausal. On the contraception front, what about asking your partner to consider having the "snip" ?!! ... View more

I had to have injections for 3 days in the week prior to my chemo - I think it varies depending on the specific make of drug?? ... View more

Hi I don't know whether you've considered using the cold-cap during chemo but I found that it's helped me enormously. I finished my sixth and final FEC a week or two ago and although my hair has thinned quite abit and my parting is alittle wide in parts, it has meant that it's not obvious that I'm ill. And that has been quite a relief as no one asks about the BC unless I decide to tell them. And even if you decide to wear a wig, I have to say everyone I've seen with one looks great - infact there have been times when I wondered if a wig would be a better option because with a wig your hair looks so glossy and healthy whereas mine has gone abit frizzy!! But either way, I don't think it's as bad as you first think it will be. I also found (and still do) it really hard to tell people that I had BC - alot of the time I just burst into tears - but for those that don't know me well (like other parents at school) I'd prefer if it wasn't obvious that I have BC - makes it easier for my 4 year old daughter to deal with any questions by other children at school. The good news is that I have found with time I can handle telling people when I need to although I still don't find it easy to immediately come out with it; generally I only tell people if they ask why I'm not working. As Jen has said, the whole experience is definitely an emotional rollercoaster - from waiting for results, to diagnosis and telling family/friends to coping with your treatment but you will get through it. I really wish you well and just go with what feels right for you when it comes to telling people. Take care and good luck with your chemo. ... View more

Hi I suffered from really severe back pain after my first lot of injections but started to use paracetamol (and v.small amounts of ibruprofen, if really uncomfortable) and this did the trick for me. Previously I thought we weren't meant to take ibruprofen but the advice line at my hospital said it was ok in small amounts. (apparently they don't normally recommend it because it can upset your stomach and worsen the effects that chemo might have on your stomach - no problems from using it myself) Hope you overcome the pain but I agree with everyone else that it's worth persevering. Take care Sarah ... View more

Hi - sorry - ended up adding comments before I'd finished - Hopeless me! When we come back I've got an appt with the surgeon on the Tueday and then final FEC on the Wednesday. Really starting to get abit anxious about what's coming next - I've not had surgery yet and have been blanking that bit out while I've been on chemo. I went to the Younger Women's Forum in Reading the other weekend and joined a session on this and I just got really upset by it afterwards. I guess it suddenly dawned on me what was coming next. I'm sure I'll cope as we all do but am starting to feel abit more depressed about the next few months - for some reason I feel that the surgery and radiotherapy are going to be worse than the chemo. Hopefully this week away will lift my spirits and get me back into the right frame of mind!! Anyway, enought about me. Chebsy - hope your bone scan yesterday went ok. Neleh - I bet you're so pleased to get through No6. Good luck with the radiotherapy starting on the 17th. Let us know how you get on. Take care everyone Sarah xx ... View more

Hi Everyone, Hope you're all feeling ok. Had FEC no5 last Wednesday and have just got over that. Thank God only one left! We're going away for half term down in Devon and can't wait - we've not been away since March and so it's along awaited get-away! ... View more

Hi Pam I had my 2nd FEC delayed by a week because of a low neutraphil count (it never really recovered from the SNB I had 2 weeks prior to starting) but since then I've been given drugs to inject in the week prior to each chemo. (I had FEC no.5 yesterday). If your consultant doesn't offer it like mine did, I would definitely pursue this - my consultant said they didn't want to keep delaying the chemo every week but it does appear to be very dependant on your own hospital's approach. If you do get the injections, I believe you can get a district nurse to come out to your home and inject for you, but I asked to be shown how to inject and have been doing it myself which actually hasn't turned out to be that bad! I've not had my mastectomy yet so afraid I can't advise on your other question. Good luck and take care Sarah x ... View more

Hi I'm due to have my 5th FEC tomorrow and am still using the cold cap. My hair is dark brown and was thick previously. Hair is falling out and the condition is pretty awful but the thinning really only shows at the parting which has gradually got wider. However, nobody can tell except for me I think - helps being tall too!! Still bought some buffs and hats initially incase it got worse and I've also got a wig lined up just in case it does fall out drastically but I'm really hoping it'll last out until after FEC no.6. Good luck to those trying to stick it out with the cold cap! Sarah ... View more

Hi I'm going to be there too but will arrive Friday morning as I only live about 45mins away (although in the rush hour I suspect it will be alot longer!!) Hope your journeys are ok and see you there Sarah ... View more

Hi All, Chebsy - really pleased to hear you had a great time in Bath - sounds like you alot of fun. Hope everyone else if feeling ok too. Had my 4th FEC last week and not feeling bad at all really - just usual BUP and feeling abit sick/groggy for first 4/5 days but could definitely be alot worse. Unfortunately had other things on my mind as had a close family bereavement and so heading up to northern Scotland tomorrow for the rest of the week. Back down south next week and am going to the Younger Women's forum in Reading - any of you going?? Nel - hope all goes well on Weds. Take care Sarah xx ... View more

Hi All I'm due to have FEC no.4 next week and have continued to have periods but I think more painful than normal. However, I've suffered in the past from bad pain so difficult to tell if due to chemo or not - might just be a coincidence. Had a seriously painful period after FEC no.2 where I ended up being giving pethadene (not sure of spelling??) and going into A&E after being sick constantly from the pain, but when I raised this with one of the oncologist consultants she just said it was probably unrelated to the chemo and "it was just me" . I think as I've had bad period pain previously she just assumed it was unrelated. In the meantime, I'm now starting to take paracetamol in advance of my period to avoid the same thing happening again. Would be really interested to hear what your consultants have to say on the subject! Sarah x ... View more

Hi Valentine, Like you my blood count was too low for me to have my 2nd dose of FEC at 0.84 (I was told 1.5 was the threshold). I also felt generally ok, apart from the initial feeling sick so was very surprised and abit miffed as I'd got psyched up for chemo. Maybe I should have expected problems as it was only 1.94 to start with so already low - apparently this was because of having surgery (SNB) only 3 weeks before. So my FEC no.2 was delayed one week and since then, for FEC no.3 and also now in preparation of FEC no.4 I've been giving myself injections of the drug which boosts your count. (I could have had this done in hospital but an hour and a half round trip plus a no doubt lengthy wait didn't appeal, so I overcame my fear and have been injecting myself - which actually isn't too bad - I have to inject for 3 days the week before my chemo is due) The count has continued to remain fairly low but thankfully still above the threshold and as Valentine said, I think they'd rather avoid hospital stays due to infections, plus my consultant said they really do not want to keep delaying the chemo as this may make the chemo less effective. So I would definitely ask your consultant/breast care nurse about this as an option. Good Luck! Sarah x ... View more

Hi Crystal I had my FEC no.3 last week and have been using the cold cap each time. Despite the extra time time and the initial 10 minutes of discomfort I've found it OK. And I felt just like you in that I desparately wanted to keep my hair. Unfortunately since no.3 my hair has been falling out considerably more than before which I'm finding quite frustrating/distressing. So for me, I'm in limbo as I'm not sure how long to stick it out with the cold cap. And based on what everyone says, maybe accepting the loss and wearing a wig (that will probably look much nicer than my hair at the moment which has gone thinner and all frizzy) might be a better option. On the other side, I'm sure you've read some of the other threads with people who have used them and have managed to last out with just thinner hair - it's all a very personal decision- but I wish you luck whether you stick with it or not. All the best, Sarah xx ... View more

Hi Chebsy Have a wonderful Birthday celebration in Bath! It's my Birthday tomorrow but not such a special one as yours - I'll be thinking of you - Cheers!! I hope everyone else is feeling ok at the moment. I thought getting through no.3 would cheer me up but have been feeling abit down during the last week - I think it's cos my hair is now falling out much faster than before and I guess I'm going to have to finally come to terms with that. And I hate this gloomy weather - I need some SUN!!! But really looking forward to tomorrow - an afternoon with friends and our kids, a BIG slice of Birthday cake (which my husband has hidden away from me incase I start snooping tonight!!!) and a few glasses of good red wine. Can't go wrong....... Take care everyone Sarah xx ... View more