trish1968, have you had blood and urine tests from docs? Did the tablets work for you? Yesterday and today I am feeling real bad, you know when you stand up and just feel all colour leaving your face, I’m not sure if I can wait until 24th am hoping tablets kick in real soon xx
iv read somewhere on hear that the brand aps seem to have less side effects for some ladies,i have been to lots of chemists in my little town and nowhere has them!also after reading this thread if its just2-3% then i think i will give up…i dont want to feel sick and crap for the next 4 and a half yrs for that little percent…sarah x
speak to onc or doc before you make any decisions they will give you a clearer picture Sarah63 xx
yes i will do on the8th of nov,i can just hear him say YOU NEED THEM…thats seems to be all he has to say on them,but at that appointment he cant say i havent given them a chance one of his comments last time. sarah x
well after a horrendous week of nausea , sweats and a terrible feeling of dread i made the decision that my quality of life is being severely affected by tamoxifen so i stopped taking them , within 48 hours i can think straight again , sweats still coming but not as intense, katyc i will go see gp this week for blood tests etc but i do believe that the fact that my symptoms are lessening strongly suggests it is the tamoxifen causing my problems , the nausea has lessened considerably too x
Oh Trish1968 thats just awful, I have been taking the anti nausea tablets for 5 days now and started to pick up yesterday, did they not make any difference to you?? I’m taking 3 a day, just about to take last one of the day and feel nausea creeping in again, please let me know how you get on, I’m not going to find out anything until 24th, please take care xx
Hiya and comiserations to all you girls who feel nauseous, I wasnt particularly affected but if any of you are going to Spain or if youve got any friends going there, I would urge you to buy a packet of Spanish Tamoxifen. Theyre available in all the pharmacies for less than £6 and Ive found them to have NO side-effects at all, theyre much tinier than their British counterparts, Maybe this means there are no impurities in them, my Spanish isnt good but I can see there are less ingredients in them.
Best wishes to you all, love Mags xx
That’s really interesting woody24, I will ask someone, makes you think what they put in ours to bulk them up??? Thank you so much for your help xx
Can I join in?
Only been on Tam for a month, symptoms kicked in day 10. Now I find i have no real appetite/ feel queasy and have ‘gone off’ many foods. I have a strong stomach and have not been sick.
For the last four days though I have had crippling (and i don’t use the word lightly!) neck pain, started in shoulders and spread up wards. Could not move neck or chew food with out pain and I strongly suspect Tam. Then became more of a migraine and vision affected too. Trying to drive in for RADS has been tricky this week.
It’s going to be 2 months til I see my ONC, til then I am on ‘wait and see’.
Carolyn x
Hi Carolyn,
Can I ask if you had chemo, possibly your shoulder and neck pain are the result of that, but your pains are exactly what my hubby has and he was diagnosed with cervical spondilitis caused by 4 vertabrae “collapsing”, give your BCN a ring and ask which doc you should consult or if youre currently having rads, ask them. I developed a really painful shoulder so they gave me a bone scan which turned out clear, reassurring but didnt help the pain 
Good luck and don`t worry about mithering them, love Mags xx
Hi Carolyn,
It may also be rads, lying with your arm above your head and having to turn your head to the side it’s easy to twist the wrong way if you know what I mean, ask them today at hospital, when I had my rads I had a weekly check up they had a list of questions, I had to answer about how I was feeling etc so they will advise you but do get it seen to.
While taking tamoxifen I think I have had all side effects haha, but only for very short periods of time and not ever worrying. The nausea is the most persistent and worrying because it’s draining me. The 24th seems a long way away…
I am a little consoled that others feel the same, take care Carolyn and let us know how you get on xx
Can I suggest you go to docs and get some anti nausea tabs - I have some made by Valoid - I had nausea on and off now for a year but these tabs are just about right.,
Worth a try.
Hi, I’ve just noticed this thread and I’m SO reminded of how I felt this time last year. I had been on Tamoxifen for 7 months with what I thought were minimal side effects. (they crept up slowly so I didn’t put them all together) However, I had one absolutely dreadful week of crippling nausea (I wasn’t sick but I was very sure I was about to be)it lasted all day and night and nothing cured it. I couldn’t sleep, I had feelings of panic and dread - it was the most awful feeling I’ve ever had. So I stopped taking the tablets. I did discuss this with the doc but for me quality of life is everything. I simply could not continue.Since I stopped a year ago, all my aches and pains in my back and shoulders have gone, the cramps, hot flushes, night sweats and panic attacks have all stopped. I don’t feel sick, I feel more alert, my mind is clearer and it wasn’t until I’d stopped taking the Tam that I realised just how rough I had actually been feeling. Apparently it takes a while for the Tam to build up in your system, which is why the symptoms can get worse if your body can’t tolerate it. Clearly mine couldn’t.
Hope this helps and good luck to all
x
Hi Katyc, Mags,
No I am fortunate not to have had chemo. I did get the chance to speak to senior radiologist on Weds and she seemed to take seriously my concerns that it has come from Tamoxifen.
I blitzed my sore head with Nurofen last night and although I have still got a little pressure behind my eyes, it’s certainly not a headache any more. I just have a knot in my stomach, which always seems to be there.
I wonder if the muscular pain was exacerbated by RADS, I was only a few days in when it kicked off.
I think I might make an appt for an eye test this week.
Thanks for the advice,
Carolyn x
Hi Carolyn,
This is my second lot of anti nausea tabs I am still feeling squeamish, I am not as bad though as when I don’t take them! I still don’t feel like eating and I feel totally drained. Throughout all treatment etc I still had energy, I am pushing myself to still do things and last night had a crying episode because plans had been made for today by others and I didn’t think I would be able to deal with it all, so from now on I am going to suit myself I am also going to say I feel rotten instead of always saying I feel fine. I realised it’s my own fault because I’m telling everyone I’m ok, when I’m obviously not so it’s stops from today. I went to planned meeting and when anyone asked how I was I just said “I’m actually feeling dreadful”. So a few stunned faces, told my family last night and received a row from my daughter for being ridiculous by keeping on saying I’m fine.
This tamoxifen has a lot to answer for!!
Carolyn, It’s really bad that your muscular pain could be caused by the tamoxifen, you read some of the side effects but it is really hard to put two and two together if you know what I mean!
Hopefully you will ease soon, I also had my eyes tested and everything was fine.
I think after all the treatment the last thing you need are bad side effects that pull you down.
I don’t want to stop taking the tamoxifen, I would feel scared to make that decision so Vallee the side effects must have been horrendous to make that decision as you obviously did not take it lightly.
Hopefully I will know for definite soon then I can see what I have to do, I don’t want to take anti nausea tablets for the next 5 years.
To all the girls, I hope all aches pains nausea etc stop soon, all the very best to you all at this c****y time. xx
i feel just the same as you all,almost glad i am not the only one,i had more energy having chemo and rads than i do now,i feel that friends and family think i have turned into a moaning middle aged women…i am always to tired to do stuff with them or have a headache,feel sick,or something else ache!then there is having conversations and stopping mid sentence as iv forgot what i was saying!!a friend last week said maybe i should join a gym and i wouldnt have all these aches and pains!!she also said maybe i wouldnt feel so tired!if only i had the energy to join!i am getting so angry with feeling crap that i cant wait to see my oncol and tell him i just can not go on with tamox or even if he would lower the dose to the 10mg.sarah
sarah63, I think you are my twin,XXXXX
katytc i wish my oncol would read this site then he might believe that what im telling him are side effects of tamoxifen!!i think he has just read the leaflet that comes with them and my side effects are not on there so they are nothing to do with tamoxifen…i shall tell him to read this site.lol sarah x
Oh Katyc it is crap isn’t it? One of my aunt’s friends said the same, that she felt the worst part of her treatment wasn’t chemo, op or rads but was Tamoxifen.
I am just so glad I’m not going nuts here. Today has been my best day since Sat, no real headache and almost normal appetite. Making the most of it!
Good luck everyone, here’s to fewer SE’s and some answers.
Carolyn xx
Fantastic Carolyn, hopefully that will be the end of it for you, have a great weekend, take care xx