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tamoxifen and nausea help please?

55 REPLIES 55
katytc
Member

Re: tamoxifen and nausea help please?

Hi Alis,

I am soooooooo happy, thank you so much!!!xx

Whiterabbit
Member

Re: tamoxifen and nausea help please?

Hi Katytc
I was wondering how u were getting on. Really pleased 4 u & will keep fingers xd 4u. I have my tablets on table ready 4 after dinner so I dont 4get, then I hve 2put them away after incase I 4get ive taken one! My memory on these is so bad @ mo!!!
Alis
Xxx

katytc
Member

Re: tamoxifen and nausea help please?

Hi all,

Is this the cure????? Was advised by bcn to take tamoxifen on a full tummy this is the 3rd day doing this and when I woke up this morning I had no nausea, I honestly can't believe it!!!! It's almost 3 months of constant nausea each and every day I couldn't remember what it was like to feel normal. As I'm writing this I am terrified I'm going to jinx it. So this is to anyone who has suffered give it a go, keeping my fingers crossed WHOO HOO !!!!! DELIGHTED!!xx

Whiterabbit
Member

Re: tamoxifen and nausea help please?

Hi Katytc
I dont know any different, as I have taken tamoxifen early evening after eating ever since I first started taking it, as I didnt want 2 take it on an empty stomach. I thought I wd b more likely 2 feel sick 1st thing in morning, as I dont eat a big breakfast. Also trying 2 cope with ses @ home, rather than work. But it is a bit hit & miss! Flushing loads 2 night, cd b the curry Oh cooked, lol!
Hope u get sorted soon, I am on wockh brand.

Alis
Xxx

katytc
Member

Re: tamoxifen and nausea help please?

Thank you Whiterabbit, hot flushes had calmed down but am sitting flushing here at the moment!!! Did you have the nausea all the time prior to taking the tamoxifen at mealtimes? I really just want it to stop xx

Whiterabbit
Member

Re: tamoxifen and nausea help please?

Hi
I take mine after eating early evening & that works 4 me. I get the odd feeling of nausea during the day. But feel better, once I.ve eaten. Have been on
tamoxifn 4 8 mths now. Having a few hot moments tonight tho! Good luck.
Alis
xx

katytc
Member

Re: tamoxifen and nausea help please?

Hi all,

An update still have the constant nausea, changed brands of tamoxifen had an ultrasound (clear) Yeh!! Phoned BCN today and she suggested taking tamoxifen on a full tummy. She said it's very rare having the nausea continuously but it happens. Have to do this for around a fortnight, if nothing changes back to see consultant. Does anyone have any experience of this?? and new anti nausea tablets. Would be very grateful for any more advice. thank you xx

katytc
Member

Re: tamoxifen and nausea help please?

thank you lincs lady you have given me some hope!! xx

lincs_lady
Member

Re: tamoxifen and nausea help please?

hello

im happy to say no i dont as a rule feel sick any more
well no more than anyone else now

ive been left with a delicate stomache and lots upsets me now that never did before
plus with a youngster at school, i do catch every bug going

but i am looking to set up a little cleaning buisness so that shows you how much better i feel!
i also take low dose antidepressents for panic attacks(never had them before) and they helped with the nausea and the flushes too

like i said it took me so long to feel any better i thought id rather not have had any treatment
but i have certainly turned a corner

katytc
Member

Re: tamoxifen and nausea help please?

hi Lincslady,

You had a terrible time, just read through your post again, do you still take tabs and do you still feel sick?
I'm looking for hope at the end of this long tunnel!!!
I went out yesterday, over to the supermarket and as I was walking the nausea came back full force. I was thinking how bad I felt when I remembered I had forgotten to take 2nd pill of the day.
I came through treatment reasonably well that's why it's hard to deal with cause I feel actually ill now. It sounds like you were the same, thank you for helping me I will see if I can get stronger anti nausea tabs from doc, will mention the ones you have. xx

lincs_lady
Member

Re: tamoxifen and nausea help please?

not as many tests as you i dont think, just every blood test and scan under the sun

i have cyclizine (if thats how you spell it) on repeat prescription from the dr as it seemed to work better than what the hospital packed me off with after chemo

and i did keep taking them 3 times a day for a long time
worth asking your gp for some different anti sickness tablets?
try to track down some aps, it seems to be the prefered brand my most ladies with problems with tam

i also drank flat lemonade through the day lol

katytc
Member

Re: tamoxifen and nausea help please?

Hi Lincs lady,

The docs etc are saying it's not the tamoxifen because the nausea started after 4 months therefore it can't be related??? Have changed to Generics from Wockhardt, only difference am having more hot flushes, just am hating the nausea, can you tell me if you had the same tests?
Honestly I just want it to stop!!!xx

lincs_lady
Member

Re: tamoxifen and nausea help please?

hi everyone
i feel for you but dont give up!!!!
i started tam in april 2010 and it honestly took me till spring/summer this yr to start feeling anywhere near well
i had every test going and was told the same. its not tamoxifen lol yeah right

i also changed brands a few times and now insist on aps even if i have to search the towns for it lol

it may have taken me longer due to having tough time with chemo, i was hospitalised 3 times a week at a time and was sick for the whole time they never did get the meds right for that

so all im saying is really is if it is the tam it will settle, i never thought id go out again the amount of things i cancelled
look into changing brands too

good luck xx

lostinfrance
Member

Re: tamoxifen and nausea help please?

I resonate with everything mentioned on this thread! I coped really well with the chemo, the rads am also on herceptin which has its own side effects...but the way I feel now with the aches n pains, slight nausea, leg cramps, insomnia, foggy brain etc etc is loads worse than when I was on docetaxol chemo!!!!
I am going to see onc in a few weeks so am taking husband as back up...and a written list....I get really tearful and down when I think I have to take this stuff for another 4.5 years....and according to the NHS predict tool it only gives me 6.5% extra.....
I want me back!

katytc
Member

Re: tamoxifen and nausea help please?

hi all,

Just a wee update, results of blood tests, two abnormal retested, now fine, in my stupidity have no idea what the two abnormal ones were, didn't ask??? Can't believe it sometimes but I think I was just so glad everything was ok.
Found two small lumps and they were fine too!!!
Still have nausea and have a scan booked in 10 days time and camera in tummy can't remember the name, after scan.
Feel as though everything is being done that can be, still being told it's not the tamoxifen, I'm just not sure!
Any ideas? how are the rest of you, do you still have the nausea? hugs to all xx

Crabbit
Member

Re: tamoxifen and nausea help please?

Thanks KatyC, I doubt it, lol! but you have a lovely weekend too!

Carolyn xx

katytc
Member

Re: tamoxifen and nausea help please?

Fantastic Carolyn, hopefully that will be the end of it for you, have a great weekend, take care xx

Crabbit
Member

Re: tamoxifen and nausea help please?

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

sarah63
Member

Re: tamoxifen and nausea help please?

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

katytc
Member

Re: tamoxifen and nausea help please?

sarah63, I think you are my twin,XXXXX

sarah63
Member

Re: tamoxifen and nausea help please?

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

katytc
Member

Re: tamoxifen and nausea help please?

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

Crabbit
Member

Re: tamoxifen and nausea help please?

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

vallee
Member

Re: tamoxifen and nausea help please?

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

Daisy_do
Member

Re: tamoxifen and nausea help please?

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.

katytc
Member

Re: tamoxifen and nausea help please?

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

woody24
Member

Re: tamoxifen and nausea help please?

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 you`re currently having rads, ask them. I developed a really painful shoulder so they gave me a bone scan which turned out clear, reassurring but didn`t help the pain 😞
Good luck and don`t worry about mithering them, love Mags xx

Crabbit
Member

Re: tamoxifen and nausea help please?

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

katytc
Member

Re: tamoxifen and nausea help please?

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

woody24
Member

Re: tamoxifen and nausea help please?

Hiya and comiserations to all you girls who feel nauseous, I wasn`t particularly affected but if any of you are going to Spain or if you`ve got any friends going there, I would urge you to buy a packet of Spanish Tamoxifen. They`re available in all the pharmacies for less than £6 and I`ve found them to have NO side-effects at all, they`re much tinier than their British counterparts, Maybe this means there are no impurities in them, my Spanish isn`t good but I can see there are less ingredients in them.
Best wishes to you all, love Mags xx

katytc
Member

Re: tamoxifen and nausea help please?

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

trish1968
Member

Re: tamoxifen and nausea help please?

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

sarah63
Member

Re: tamoxifen and nausea help please?

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

katytc
Member

Re: tamoxifen and nausea help please?

speak to onc or doc before you make any decisions they will give you a clearer picture Sarah63 xx

sarah63
Member

Re: tamoxifen and nausea help please?

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

katytc
Member

Re: tamoxifen and nausea help please?

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

trish1968
Member

Re: tamoxifen and nausea help please?

hi ladies , another case of nausea on tamoxifen , i have just recently started 2nd lot of anti - sickness tabs to try and ease it , so fed up with the se of this drug and am really thinking of coming off it - my onc said it gives me an extra 2-3 % protection and i have to weigh up all the options, hot sweats drive me mad , joint pain and weight gain , fed up ? yep i really am , been on it for 5 months now and its effects pretty much kicked in straight away, i am on the wockhart brand and tried generics, they affected me terribly so back on wockhart now

katytc
Member

Re: tamoxifen and nausea help please?

A difficult choice jen3, I did expect to have some side effects and seem to have been luckier than most, until this nausea started. After all the treatment, I did feel I was getting back on track, I now feel as though I'm falling into a big hole, I feel like ***p and look like ***p!!! What I need to know is does the nausea stop???? I can put up with it if I know there will be an ending to it soon not in 4 1/2 years!! xx

jen3
Member

Re: tamoxifen and nausea help please?

So sorry to hear of all you BC Club members suffering Tamox SE's. Reading similar posts back in July,just when my Onc had asked me to decide between Tamox & Femara made me refuse to take either.Having researched both I reached the conclusion that 5(or more?)years of ghastly SE's weren't worth the extra 2%-3% possible reduction in my chances of the cancer coming back.

My choice - but we all have choices, don't we?

sarah63
Member

Re: tamoxifen and nausea help please?

oh the sickness is defo tamox..im not in any dought,i just hope it doesnt last the 5yrs!!but i am defo going to try changing the brand..worth a try. x

katytc
Member

Re: tamoxifen and nausea help please?

I agree you do feel as though you are paranoid, being really honest regarding the nausea I don't feel its anything to do with bc but the tamox by having all the blood tests etc, everything else is being ruled out. Just went for a walk to see if fresh air would do me any good it hasn't haha. Hope the pain stops soon for you all xx

sarah63
Member

Re: tamoxifen and nausea help please?

i must add i havent been on here for a while as my other half said i was para from reading to much...well im still para so i think im aloud back on as it clearly wasnt this site making me like it...x

sarah63
Member

Re: tamoxifen and nausea help please?

SAID WHAT WILL IT BE NEXT WEEK!!x

sarah63
Member

Re: tamoxifen and nausea help please?

yes im the same worrying over every ache and pain..then the nxt thing it wears off and then something else somewhere else.lol..this week its my back last week a stiff neck my OH

haughtaj
Member

Re: tamoxifen and nausea help please?

Well we all seem to be in the same boat so it must be the Tamoxifen. I also seem to have a very sore back - has been like this for nearly 2 weeks. Have others the same problems? You can't help but worry it is something more sinister however. My nausea has been helped only a little by now taking tablets at night but is still pretty constant.

sarah63
Member

Re: tamoxifen and nausea help please?

yes i also have aching joints,i feel 80 with my knee's,cramp and the very bottem of my back....i have my next appointment nov 8th when i will moan away! x

katytc
Member

Re: tamoxifen and nausea help please?

I'm not being sick just feel sick, oh eltticks, there's always something, I waited over two weeks before going to docs about nausea, don't leave it too long, have you been taking tamox for a while?? xx

elttiks
Member

Re: tamoxifen and nausea help please?

I brought my guts up within a few days of starting it, but settled down really well after that. However, the muscular pain has driven me to tears, it's a bit like the pain from chemo but not as intensive. My back and legs throb, but i'm going to see how long I can put up with it before having a grump about it.

katytc
Member

Re: tamoxifen and nausea help please?

haughtaj, I was beginning to think it was only me!!! I'm not going to be seen until 24th Oct but was told at docs that this can't go on, tell me about it. I have just changed brand have been on Wockhardt am now taking Generics, first day today. It is very difficult making plans etc had to cancel a few things recently so feeling fed up now how do you keep you're spirits up when you constantly feel yuk??? A few well meaning folk have recently told me I look awful, cheers for that,are you the same?? xx

haughtaj
Member

Re: tamoxifen and nausea help please?

I am so pleased I am not alone in this. I have been taking Tam for about 6 months, never changed brands and apart from hot flushes not too bad. However last few weeks I have been nauseous from morning till night, am still eating but doesn't change this feeling and now take my tablet in evening instead of morning but again no difference. Have mentioned it to my BC Nurse but she was very non-commital. Don't know what to do next.
Take care everybody.