Breast Cancer Now Forum

I read on here that a daily glass of tonic water really helps joint pain, especially knee pain. Been doing this 3 weeks and I can actually kneel now. Not sure of science behind it, but I am going to carry on ... View more

Hi did.a support group ever happen? Am in Bradford but.v happy to travel. Also am grand old age.of 48 so I may be too old. Diagnosed April 11, 2 surgeries, chemo, rads, herceptin x ... View more

Am afraid I haven't got miracle advice, as I have gained some weight and really struggle to lose it. Exercise, as in walks, helps maintain. 1200 calories is miserable , I would just watch what you eat and allow treats. You have been so much to get there, it's sad you have to rob yourself of nice things. I view tamoxifen as my life saver so I am learning to accept the side effects and consequences of it more, hate my weight but glad to be alive. I feel your pain, have been there and decided to accept some things I can't change. Just a thought..have you tried changing brands of tamoxifen? My se's were much worse on one brand than another, good luck x ... View more

Sorry about the bad writing it's my phone! Forgot to say that even tho one brand didn't suit it may suit you ie wockardt may work for you ... View more

Hi there are quite a few brands of tamoxifen. I had a brand "wokhardr" that gave me all the symptoms you describe, I felt s so poorly I thought I has ovarian cancer and had all the tests. Then I realised it could be the brands so I asked the chemist for a different brand - I now have Teva or Relon chem. completed different again, hot flushes are bearable and all knee pain but that is all. There has been quite a few threads on this in the past and it ow worth a try. Alll tamoxifen has the correct anoint in but it is then "filled" with other imgredients which I believe you can react badly to. Good luck x ... View more

Hi I had a real problem getting hold of teva.  I have attached a helpline number and email.  I rang them when the pharmacist said it was out of stock, and they were more accurate in when it would be available - which turned out to be 6 months!   tevauk.com    For all products marketed by Teva UK Limited, please call 0207 540 7117, we are available from 8.30am to 5.00pm. Alternatively, you can emailmedinfo@tevauk.com, or use the 'Information Request' form. Teva used to be known as APS also so if that is available you could go for that.  I have teva or relonchem now and try to stick to those 2 if possible.   I had the same reaction with venlafaxine and good on you for sticking it out, I couldnt do it - lets hope they work for you.   good luck x ... View more

I totally understand and it's not one bit selfish. Do what is best for you - I for one am always under pressure if advice is given to follow it but then sometimes regret it. Have a think and do what you can to reduce the sweats! The different brand and venlafaxine may do the trick- fingers crossed xx ... View more

Hi that's good that your consultant is emailabe😊 venlafaxine is an anti-depressant but normally 75mg is starting dose for depression. Just to warn you it can make you feel a bit sick/dizzy for a couple weeks whilst it settles in your system, - it maybe that the Teva brand reduces your sweats as well so it might be worth doing that first with the other drug as back up. Only saying that because I had awful sweats with one brand but but much less with the one I am on now. I take it always in a morning - only particular thing I notice is I always whatever the weather need a thin shirt on, can't tolerate being too warm. Good luck with whatever you decide is best- I is trial and error with tamoxifen and I really wish someone would so research on branding because not many professionals believe to can be a problem x ... View more

I think it is worth a conversation with your Gp- there are things you can also take to deal with hot sweats- I am like you, duvet on, Duvet off all night. Not sure any brand is ideal and I think you eventually decide which SE's are manageable. Gp may say to see the packet out but then try another brand. Hope you have a receptive GP, not sure mine believed me and all the pharmacists tries to fob me off saying they were all the same BUT my GP knows me well enough to accept my reasoning and so what the pharmacist thinks doesn't matter! Hope it settles down- I feel your pain 😒 ... View more

Hi all been on tamoxifen 2 years. It is tolerable but last Xmas I picked my prescription from another chemist, and it took me a few days to realise why I was so ill - abdo pain, sweats, headaches. I had been on Teva and this was Wackardt. Persuaded my gp to re- prescribe excluding Wackardt. Teva was all out of stock nationally so I hedged my bets on Relon chem. I was soon back to normal. All tamoxifen has tamoxifen in it BUT it is bulked out with different additives. I haven't got to the bottom of what brand has what in it but definitely couldn't have tolerated the Wackardt any longer. It's personal preference and tolerance tho and about finding the one to choose. My chemist only has Wackardt as it is the cheapest on the market, but they have to order mine becos of the instructions on the prescription. ... View more

Started on teva and it went out of stock. Given wockhardt and within days had stomach cramps, foggy head, and terrible sweats and nausea. Now on relon and I am fine apart from joint pain. ... View more

Hi all just to say my first week on tax was very bad but day 12 onwards have felt fine and no pains. My only problem is itchy hands and feet and tingling. It's bearable and I wrap my hands and feet in wet cold tea towel a few times a day. That was an idea from my 10th old daughter! I asked to see my onc and my last 2 tax he is going to give me at 75% of the first one. He said I would then have 75% of side effects which I guess makes sense. THe other option was going onto weekly paclitaxol for 6 weeks. But I am nearly done and I could not face every week. He said se's much less but knowing my body they will probably be as bad and I will never get a good day for 6 weeks. So have decided to baton down the hatches and go for lesser dose. Good luck all, can't believe it has come round so quick again! 2nd November my last one, can't imagine the relief walking out that chemo unit x ... View more

hi all. i had taxotere 2 weeks ago now and was so poorly. i saw my onc today who described my symptoms as severe. he gave me 2 options - to grin and bear it as i have 2 more to go or to go on to Paclitaxol weekly for 6 weeks. I was a bit overwhelmed by the decision as i was desperate to get chemo over with but on the other hand have spent the last fortnight in bed and in hospital. i agreed to taxol but am feeling so nervous about it. I have read your posts and you all seem to think it is manageable? every week seems daunting, and i dont want to be permanently unwell for the next 6 weeks. He seemed very confident that the side effects would be much less than taxol. Any advice very gratefully received x ... View more

Hi All I echo what ST has written. It is so rubbish all of this for us. Its by far the hardest thing I have ever done, and to go every 3 weeks to make yourself so ill is beyond painful. But the end will be in sight and like ST says, we will look back in 6 months, years and wonder how we got through it all. But we do because we want to be here for ourselves and our loved ones. there is little choice really. I am now day 13 and back to normal (if I can remember what that was). Had a busy day yesterday and feel v tired today but that is bearable to all the other SE's. Good luck all x ... View more

Glad your feeling better ST. Normal day today for me hooray! Hope headache settles down westlands x ... View more

Have just come out of hospital where I was in a 3 bedded bay. An auxiliary came in and said quite loudly "oh you work in Marie curie don't you" I hate this publicising at best of times as it always means I know someone directly or indirectly in the hospital . Then to add insult to injury, she pulled out her notes and said "there Is someone else on the ward from 'MC, gave me her name! (confidentiality and all!) and said she would let her know about me! I was mortified as I am such a private person. Cried when my OH got there and he went to gently complain to the sister. To be fair the auxiliary did come to apologise then, but in lot of ways damage was done. Its like your life doesn't belong to you anymore with bc, it seems to give others rights that they didnt have before! ... View more

I am 11 days post tax. Aches and pains gone now. Main problem which watery eyes, cracked lips and corners of mouth. In fact my whole body feels like a shrivelled prune. Went to dr and got diprobase ointment and shower gel and am trying blistex on my mouth. Had couple glasses wine last night and have a few tax trots this am. Think I have turned a corner tho and feeling more normal. Good luck all, chemo is the pits x ... View more

Hi all sorry for not reporting back earlier. Basically Saturday saw me laid in bed unable to move in agony. No pain relief worked and I felt very very poorly. Sunday and Monday not much better and went back to chemo fir review. Gave me some codeine and sent me on my way. Tuesday bit better pain wise but by 7pm spiked a temp of 39 from nowhere. To cut a long story very short am in hospital on iv antibiotics for a septic urine infection. The question now remains was the pain chemo or the build up to this severe infection. So I dint want to paint a terrible tax picture as you can get terrible all over body pain with a UTI. Todayi massively better, no pain and feel well. Does make me wonder if I went into chemo not completely well altho my bloods were all ok. So I am going to have to wait for next tax to get a true picture. One thing tho is that coming off the steroids is like cold turkey. Felt like it was the "dt's". It's such a huge dose just to stop. Good luck all and hope we can enjoy the weather. ... View more

hey sandytoes, how are you. was thinking about you today and wondering if you surgery is due soon? ... View more