Breast Cancer Now Forum

...fascinating! I am currently on Tamoxifen but have asked to change to AI (Femara being my preferred option.) Onc denied there was a financial implication when I suggested this (hohoho) but a nurse had already told me 'you'll be on Tam for a few yrs as it's off licence and cheap!' Was given generic Tam and declined it asking pharmacist if it would help if GP specified I had Wockhart? No,it's what we can get was the response. But, I have a friend who travels to Spain regularly and buys her Thyroxin there 'cos she's convinced it's more pure than the prescribed medication here. I agree, we have enough to deal with, without this, Barbara ... View more

..interested in the comments re organic chickens as when I was talking to a friend recently(real country woman) she said that chickens were just as likely, if not more, to be fed hormone food that cows! Re Chlorella - was recommended to me by acupuncturist and I've taken for a month (£21) and do think it's made a difference and they're such a lovely green colour and v small tabs!! B ... View more

Laura - it wasn't a helpful response. When I was given my initial diagnosis the bcn gave me NOT one smile, just some leaflets. Thought about this and decided I wasn't prepared to work with her, so when I saw someone else who gave one small smile I asked for this to be put on my notes. My surgery is at a London Teaching Hpl and I am appalled at the lack of 'customer care'. Y'day I had routine onc appt (3.45) and was seen at 6pm - receptionist: no smile and typing with 2 fingers. As time went on I was joined by 2 friends (one of whom works in a different clinic at same hpl) - she was gob-smacked at the way stressed patients were treated and the other, whose h'b has had t'ment for prostate cancer could also not believe it. Another patient y'day said that at an earlier appt, she felt so unwell she told the receptionist she had to leave and was told: you're lucky to get an appt!!! Dear God and the cuts aren't biting yet. Take care and, where you can, take control! Send PM if it might help Barbara ... View more

Hoped to be there but am flying out to the sun. Bit out of touch so hope you are all OK. Y'day had routine oncology appt for 3.45pm -seen at 6pm - surely this is unacceptable. Was joined by OH and two dear friends: OH just went 'oooohhhhmm'. Friend from Isle of Wight (whose h'b had prostate cancer)couldn;t believe it and other friend who works in a different clinic in the same hpl was gob-smacked at total lack of customer care - she is making a complaint! On an earlier date another patient who felt really unwell said she couldn;t wait any longer and was told 'you're lucky to have an appt'. Don't get me started on the bcn's. Thinking about asking for transfer to different hpl - any ideas re London Hpls?? Do let me know when next BA coffee morning is, pl. BW ... View more

...but Tamoxifen isn't the only drug available for this type of cancer. When I see my oncologist next month I'm going to argue this, B ... View more

...brain being scrambled by tamoxifen + weight gain, newly discovered eczma and people telling me how well I look when i don't feel that bright and, a good night's sleep - wot's that? Yes, the back L shoulder (Mx and SNB side) really hurts and R elbow is continuously v painful - never probs before. But as OH said: fat, a few aches or cancer - no contest. Never mind the hot flushes! B ... View more

Hi, Phloxy - take care of yourself gently!!! I had (no choice)Mx 1st Oct - felt fine for a week and then downhill. I'm pretty stoical but still feel mutilated and lack energy - maybe 'cos I developed an infection. If your oncologist wants to prescribe Tamoxifen ask about the side effects, partic those not on the printed leaflet! PM me if you want more info, B ... View more

...if you get this when the site is down - HAVE FUN and sounds like some of you are pigging out - great. If the next meet is Reading, can I come? (W London, well, it's south of Watford!!) Any advice for this Tamoxifen brain, pleease. I've mislaid my prosthesis - OK you can all laugh - my friends have laughed like drains and then covered their mouths Oriental style! I don;t know whether to laugh or cry but this drug is seriously scrambling my brain. Again, have fun, Barbara. ... View more

...tamoxifen brain kicking in but I have been editor - so, if I can help, will do. I am just gobsmacked that there seem to be 2 worlds: the so-called usual/?normal and the one of those with a cancer diagnosis, B ... View more

...ridiculous time for a meeting whether you live in London (public transport is always delayed) and, if you live outside London, ??spend a night in a hotel. Pl think again and I am neither L or bi. Barbara ... View more

...soooooo glad Theresa, have been thinking/worrying re you Who did you give a kicking too or did you just SMILE????? Barbara. ... View more

...CM and cold cap (it always sounds the opposite of a Dutch one)I am so lucky I didn't need chemo but I am another person who HATES the cold, so this winter's been a b..... in all sorts of ways. If my hair gets wet, i get a head-cold: stupid isn;t it? But, CM, if you DO hate the cold, will this cap really help or will it be yet another S/E? Well done Ellie: the photographs really showed a 14yr old: one minute looking a little childish and the other showing amazing maturity< B ... View more

...I hope that you will find this helpful, altho' it will be painful. H, the 33yr old sister of one of my god-daughters died last Sept (aggressive bowel cancer). Her daughter was less than a year old. H's parents recorded conversations with her and, at her Thanksgiving Service, there was a brightly coloured box on a table, with coloured writing-paper by it and people were invited to put their memories of H in the box. They are also creating a life-story book for little S. Thinking of you all, B ... View more

...Charing Cross and not impressed, partic with BC nurses!! B ... View more

..there seem to be a number of threads re T'fen and side effects - maybe moderators could put them together??? Thanks, BW ... View more

Wow, Woody - you've confirmed my suspicions!! When we go to Spain/Canaries, we buy a few creams, medications that need prescription here. My h'b has been asthmatic since early childhood and here he's regularly asked for asthma review (I guess, that's the GP practice ticking govt boxes) Go to Spain and they say how many inhalers would you like?? I'm on T'fen: S/E - hot flushes, weight-gain, depressed, no energy, achy bones and sooooo absent-minded. Have a friend who is on a thyroid drug long-term and swears that the Spanish ones are more pure/effective and whenever she goes, she buys them over the counter. So, when we go in April I'll see what's available. Thanks, BW ... View more

...there have been posts on other threads re hot flushes and chillows, so you need to search. My recollection is that 'chillows' help but you need to check for yourself. B ... View more

Hello Elaine - started Tamoxifen last Nov. Have had various S/E's. First I noticed was pain in L elbow, then right, sometimes lower back pain and knees - never know where it will be, sometimes not at all! Talking to a young woman at a BCC event in London, there are days when she has trouble straightening her leg in the morning and she is a professional dancer. Guess, if it's really bad you could ask Oncologist to change you from Tamoxifen to another drug. I'm more worried about memory-loss and scatter-brain - see another thread. The cold weather doesn't help either!, Barbara ... View more

...Annie 22 - my cupboards need cleaning but afraid that during the sleepless hrs last night didn't give them a thought! So happy I have a friend who enjoys housework and has regularly changed beds when my arm wasn't up to it. What really made me happy today was seeing eldest off to Cuba this morning. Barbara ... View more

....am I glad I'm not them but WOW! Well done. Virtual sponge cushions and rings on their way. Know for a fact that all gremlins and witches are toooo tired to be arsey tonight, so sleep well, Barbara ... View more