Tamoxifin Buddies wanted!!!

[annalou24]

I'm on Wockhardt too.

[Guest user]

cheers for that..just checked and i,m on the one you just mentioned....so fingers crossed.....thanks again...

[Guest user]

Fellow Scouser,I don,t think it is going to hurt your treatment by delaying starting Tamoxifen a week later.I left it a week after being given the prescription by my onc and I don,t even think about it now.The worst SE for me is the flushes and sweats,day and night,but these have greatly decreased with using the wockhardt brand.I think it,s trial and error which brand you use.Good luck to you.

Take care,

Ann xx

[Guest user]

oh bless..acne.!!!......right adding clearasil to medicine box....as they say everyone is different........and goodness me we all are.....i just like to be preventive as much as possible.....i only came on tonight to see how/when i could start dyeing hair......all 2cm,s of it......ha...

[annalou24]

scouser,
you might be lucky like me and not get really bad side effects. I had a few days of feeling weepy and a little queasy ( not sure if that was the Tamoxifen or just generally feeling low/anxious because of BC...) and now ( 3 month on it) the only really noticeable side effect I have is flippin acne like a 15 year old!!!

Anna x

[Guest user]

thanks annalou....didnt realise the side effects could be that bad until i read some of these threads and sat here thinking....i dont really need to feel worse.......was given tamoxifen on last chemo 0ctober 15th and told to start in 4 weeks..which is today....seeing chemo doc next friday for check up and chest x ray results ..so might leave till spoke to her....

[annalou24]

Hi scouser

maybe you could ring NHS Direct ? ( although they probably wouldn't know??) or your out-of-hours doc helpline if you have one ??

Other than that, I would say it won't hurt to leave the Tamoxifen for a few days until you feel better. I didn't start mine until a week after I was given it...needed to get my head round a few things first. The onc said it wasn't a problem.

Hope you feel better soon

Anna x

[Guest user]

hi i was supposed to start tamoxifen today but got chest infection and so on anti biotics and an inhaler......
is it safe to start it now?....feel yuk and really dont want to feel worse..........

forgot to ask doctor about it and now sat here thinking ..ooops what do i do?.......

[Guest user]

Hi all

im back,pc fixed yipee. ive been taking tamoxifen for over 3 weeks and so far so good just hot flushes.

had marina coil takenout last wed and have been bleeding on and of since which is horrible as i had 7 yrs period free but hey ho.

For those of you who had chemo my toenails are lifting off not painful at all and have new nails underneath just big toes to go now. also my eyelashes are growing back now as well yipee but hair is grey/white but am holding back dying it for a while yet

saw surgeon yesterday and will talk about new boob in 6mths something to look forward to in the new year

Feeling like my old self more or less now so im well happy but have put on half a stone but no increased appitate since being on tamox.

so all in all its good

love to you all
Sally x

[Guest user]

Thanks for the info on the hair dye - I may now give it a go! As for the ironing question - I reckon 2-3 years should cover it LOL - don't do anything unnecessary AT ALL. Glad u r ok on the Tamoxifen, take care Debbie x

[iamok]

Hi All
I had my last chemo on the 1st of sept, my hair is about 2cm long, I have not been wearing my wig or scarves at night in the house, the kids are fine with it but my son kept asking when i would be able to dye it!!!! He is 12 and a grey haired mum is not cool!!! I phoned the guy who supplies the wigs for the hospital I am under and asked his advise, he is a specialist and been in the buisness years. He said to dye my hair with a semi permanant colour and if that was ok, when it had grown somemore use a permant one. I have coloured mine a golden blond colour, no problems and when i look in the mirror i do feel better and my lovely son is pleased he thinks i look more normal. Such alot for kids to get their heads round. The problem I have got now is nasty sores on my face post chemo and I am sure stress, I have found this journey very,very hard! I have tried allsorts anybody any tips? Have been on tamoxifen about a month and so far ok!! Also when can I iron post mastectomy? Such alot of questions, take care Mand

[Guest user]

WoooHooo!! Just been for my weigh-in Slimmers world and I have lost 2 1/2 lbs best loss I have had in weeks and I'm putting it down to being off Tamoxifin for 9days now.And I have also felt GREAT!!! for the last couple of days,sleep also slowly returning but lots of "far out" dreams tho!!!Getting about 4-5 hrs
Let us know if you do dye your hair as I'm thinking about it when my rads finish : ) As yes the grey hair does get you down some days...
Hope every one is having a good week
Jenhar
xxx

[contrarymary]

Not lost or gained any weight on Tamoxifen, but I'm not finding it increasing my appetite. I am doing a lot more exercise than I was before dx(ie I am doing some), so at least I'm maintaining my weight - which I'm viewing as a victory in itself! The most positive thing at the moment is that although my bathroom scales tell me I weigh exactly the same, I look as if I've lost weight because I'm a bit more toned. Hope I can keep it up - I'm worried that if I have to stop doing what I'm doing (walking briskly for 40 minutes a day 4 days a week) I'll begin piling on the pounds.

I think part of what Tamoxifen is doing to us is probably slowing our systems down. I read somewhere that as you get older you have to reduce your calorie intake more to maintain the same weight, so this oestrogen suppression is probably acting like the natural ageing process kicking in early, and boosting the effects. Not run that one past my oncologist, but I may do so in December when I'm due to see him.

Ann - I found pilates quite good for the middle - pulls it all in so at least you look like you've lost weight even when you haven't... worth a try?

[Guest user]

Well that's a relief - I have put on a stone since January!Just started to get my head around trying to lose some weight - then it will be christmas ho hum maybe make it my new year resolution!

Has anyone out there been brave enough to dye their hair before post 6 months chemo is up?? From what I have read you shouldn't use dyes with amonia and peroxide in etc but there are vegetable and henna dyes available and I am getting a bit tempted to have a go - then I can ditch my wig as I have quite a healthy covering of WHITE & GREY hair now. I am happy with the amount, just not the colour! Read some stories where the hair has turned green because of the chemicals still in the hair. Any advice greatly appreciated ! Cheers Debbie x

[Guest user]

I definately think the Tamoxifen contains an appetite increaser so we eat more to keep us strong!!!!!!!!!!No,I really do know what you mean.I have put on 15pounds since March 09 and no matter what I do,I just can,t shift any weight.That just adds to the misery of this BC.Has anyone found an exercise that works on your middle?Live in hopes.Ha Ha

Ann.x

[Guest user]

Ah! Jellylegs I know what ya mean.....I can eat as much as my husband and his he avery large appetite.I go to slimmers world to try an keep mine in check I go up an down by 2lbs every few weeks but never seem to loose any more, which is soooo bloody fustrating when you have been so good. I'm hopeing being off Tamoxifin for 3 wks I will break the barrier.Also have noticed in my 1st week that my Hot flushes seem to be subsiding , not as fierce and the last 2 nights I think I onlyhad 1 during the night!!! : )

[Jellylegs]

Ok.....Is it the Tamoxifin or have I become a gready pig???
I've now put 14lbs on sinse diagnosi....(Aug 09)I admit to having a bit of what I fancy too now.That black Christmas dress will have to be let out lol
Jellylegs xx

[Guest user]

Sally, I had mirena coil taken out after 4 blissfull period free years. Didn't have chemo so didn't have that messing up my cycle,got my period back a month after coil was removed then had 4 normal cycles then period free for 65 days then started another period ! Had hoped they were just going to disappear but hopefully they are on their way out.
8 months on tamoxifen and still side effect free,saw my onc last week and she said to just enjoy that I am !

Sandra x

[Guest user]

Buckwheat,you are welcome.That,s what I love about all the different threads,you never know what you are going to come across.

Ann

[Guest user]

Hello

Wow I just checked my Tamoxifen packet and realised it is Wockhardt, which is a change from previously. My sweats have definitely decreased but I didn't realise it could be due to the change in brand until I read this thread.

Next time I get the prescription filled I will definitely ask for Wockhardt again. Thanks for the info.

Buckwheat

[Guest user]

Thanks Jellylegs,I have been much better the last few days.After I read all the posts concerning makes of Tamoxifen,I went and checked mine.I had been on APS since march and my new presciption was Wockhardt.My sweats,day and night,have reduced considerably so I can live with that.Painful ankles,knees and now wrists continue.But hey you can,t have everything.Hope all my buds are coping okay.

Ann.x

[Guest user]

WoooHoooo!! I have been told to stop taking Tamoxifin for the next 3 wks to see if my SE will subside(havin radiotherapy at the mo).This is day4 and still very poor sleep so waiting!!! And have been told that my SE of stiffjoint ,ankles and legs and numb hands at night is due to the chemo still in my system!!!!!not sure about that!!!!!
Anyway apart from that feelin not bad today,just done some Tai chi from the Breast cancer Haven cd Its not bad gets my arms moving anyway.
Will let you know how it all goes.

Hope everyone has a fab weekend.
Jenhar
xxxx

[Jellylegs]

Welcome flashann. Please let your new buds know how you are getting on xx

[Guest user]

Hi all,I hope I can join your lovely thread?
I started taking Tamoxifen in March this year and up until very,very recently,2 days actually,I had been having bad sweats or flushe
s,both day and night.AS I said 2 days ago SE reduced.I started taking Tamoxifen before bed about a month ago and had terrible flushes day and night until the other night when I slept nearly all night.The odd sweat woke me up but found my Chillow and went back to sleep.The main SE I have at present is stiff,painful ankles and knees.I am also quite down,not depressed,at times but put this down to not having anyone to talk to.I hope you will be my best buds?

[Guest user]

Hi All

My pc isnt working so havent been able to come on at OH tonight so ive pinched his LOL.

Been on them now for over 2 weeks and the sicky feeling has gone.thank goodness. getting hot flushes which disturb my sleep, havent slept through for weeks now as had them on the tax chemo as well.

I had my marina coil taken out this week (boo hoo) so now i have periods to contend wiith too , havent had one for 7 yrs due to coil so not happy but maybe the chemo might have stopped them anyway. just have to wait and see.

I actually feel like the old me is coming back now.. so nice to feel ok again after all the treatments. see onc and surgeon next week too. will ask about reconstruction but i know it will be too early for that.

glad everyone seems to be ok

take care
Sally xx

[chipper]

mission accomplished - 2 packs of Wockhardt !

[Guest user]

Hiya ladies,

Just wondering if I can join your gang?

I finished chemo a couple of weeks ago, saw my GP today who gave me my first prescription of tamoxifen... I'm due to start next week.

I'm just reading through all of your posts (although only half way through at the mo), and it's great to get a few tips.

This is a fab thread.

Big hugs to all you tamoxifen girlies out there!!

AM x

[contrarymary]

Not noticed any difference yet since switch to Wockhardt from APS. Obviously early days, so not taking symptoms or lack of as any kind of settled fact for my 5 years. It feels like a mountain to climb if I think of 5 years. FIVE YEARS!!! So I keep on one month at a time.

Still getting dry eyes. Possibly slightly less achey knees, but the slight dragging feeling in lower abdomen is back.

Most recent period was a bit of a damp squib - but from what I've read here, that could change next month. Does make a bit of a dilemma as far as what sanitary protection to have...

Am determinedly keeping up my walking. I'm not losing weight, but I'm not gaining it either.

Have found my appetite has changed though. Not getting as hungry as I was before, and definitely less fussed about chocolate, which was a must-have before.

Not had any experience of dizziness, but then I do have a pre-existing condition which gives me vertigo from time-to-time so I probably wouldn't notice if I did.

[Guest user]

Hiya Jackie, been taking tamoxifen for a full two months now and that is not something I have felt - I did feel extremely dizzy when blood count dropped after chemo so if you have been having chemo recently it may be connected ?? May be worth reading back in this thread to see if anyone else has the same? Sorry cant be more helpful, so far I am getting on brill with it and I hope you soon settle down with it best wishes debbie x

[Guest user]

Hi

I started tamoxifen 2 weeks ago today and started feeling dizzy about a week ago. Not too bad now but defineately light headed! Has anyone else had this?

Jackie

[chipper]

I've had an idea -am going to pick up my next precription on Friday and I think I'll ask the pharmacist before they give me the tablets whether they have the Wockhardt brand in stock (which is what I have had so far - I'd rather not risk a different brand !) - if they don't then I will go to the other chemists in town 🙂

[Guest user]

Hi,ladies i had 4 tabl till today no 5 today i feel ok ,had my flu jab yest ...a bit tired mainly cos had to drive ti rads come back ,then go to GP surgery ..and i was soo tired...all the best to everyone with tamoxifen....Christina

[Jellylegs]

Hi all,
Have been given Wockhardts this month and I DO NOT have a headache for once.Fingers crossed was on APs brand xx

[Guest user]

Hi,Anna my period stop after TAX -chemotherapy i just had,hot flushes as well so my hope is menopause....take care ..

[annalou24]

Christina,
I haven't had many side effects from it at all and have been on APS and Wockhardt brands. I felt a bit queasy when I first took it, but that was more likely anxiety! It has given me spots and some mood swings. This started after about a week. It has also made my periods a bit heavier, unfortunately !

Hope it goes well for you !

Anna x

[Guest user]

Thank you Anna ...i am ok now .....does it take a month or so for any SE ....?second tabl tonight...i hope tamoxifen work well with my body...all the best for other "begginers"...Christina

[annalou24]

Hope it goes well Christina !

Anna xx

[Guest user]

Hello ladies my first pill is going to be tonight so i will see ....Christina

[contrarymary]

I start on my first pack of Wockhardt tablets on Sunday, I'll keep an eye on my body temperature to see if it makes a difference for me too! I've made a note of the symptoms I've had on APS, so I can spot any differences with the Wockhardt ones. Only thing is, it may be that even if I feel the brand change is worse or better, because I'm only just starting in, it could be that the same brand has different effects for me down the line. Ho hum.

Period #2 on tamoxifen has started. On the positive side, the pre-menstrual symptoms haven't been so bad as they usually are.

[Guest user]

I just switched to the wockhardt brand, not by intention and they have dramatically reduced the hot flushes

[contrarymary]

Nearly done the first 30 days.

So far I'm getting achey knees, and some stiffness in the ankles. Generally feel like my body temperature much hotter than it used to be - and soles of my feet normally feel like they're on fire.
Getting very dry eyes too.

Haven't been back to GP or oncologist to ask as I'm sure they'll say it's early days yet, so at present I'm not taking anything alongside the tamoxifen (unless you count lemsip for the cold I'm fighting off).

I'm walking like a demon (to get the weight off and get a bit fitter) so I hope the joint pain thing doesn't put the ki-bosh on that.

There seems to be a bewildering number of side-effect symptoms you could possibly get with taking the tamoxifen, and different degrees of severity to those symptoms, don't there?

[orangecat]

I have been taking Tamoxifen for just over a year and I find the side effects come and go!! Work that one out?? Nothing really happened until about the 6 month just a bit of nausea ( like morning sickness ) and then the hot flushes from hell started. They have gone now and I'm left with the odd medium flush. My upper body joints are really playing me up at present, ( shoulders, elbows, thumbs especially ). GP sent me for a series of X rays which ruled out arthritis, so must be the Tamoxifen.

Only 4 years to go !!

Kat xx

[Guest user]

thanks for that sally! think it is the tamoxifen, the rads people said it probably was when i mentioned it today. as you say its difficult to know which new thing is causing the problem!!
i have some antisickness tabs left so i will try those as i hate the nausea feeling!
I'm a week in now so hopefully it will stop soon!

love debs xxx

[Guest user]

Hi Debs

just read your post and i think now its the tamx thats is making me feel sick as i didnt take epo for a couple of days and i still flt sick, I have been taking anti-sickness pills left from chemo.
I googled tamx and it said that neausea is a common side effect 1/5 apparently and usually goes after a week or two and can be treated with anti-sickness pills.
Today i just took some at abt9 and have felt fine for rest of day so hopefully it is passing, its horrible isnt it, also ive had to take omeprozole again a few times this week.
Its good to hear i not alone with this, we just get over chemo and this happens.
Glad your 1st rads have gone ok you will be surprised how quick it goes.I cant beleive its a week since I finished mine.
I must just say that sicky as a se of epo is very very rare apparently and im taking mine again.
Sometimes its so hard to know whats making us feel yuck when we start more than one new thing.

take care and keep slapping the cream on

love Sally xx

[Guest user]

Hi all can i join in to please! Have taken 6 tamoxifen so far! have felt very queasy and got indegestion, but have been taking evening Primrose oil too as onc said i could, so was interested Sally that nausea could be a side effect of that!
Also started rads today! so not sure which is which with side effects!!!

love debs xxxx

[Guest user]

Hi all

Well ive taken 5 tam so far and am still feeling sicky on and off, ive just taken so anti sickness pills again, ive gone off food as well and i havent taken any epo since thurs.

Pauline it was my onc who said take the epo.....

So as i am still feeling sick i think im gonna try them again and it made no difference not taking them.

I see my onc again so i'l give it til then and if im no better I shall talk to her about it.

hope everyones ok

Sally x

[Guest user]

Hi there.My onc was all for me taking EPO and I'm 8/8 for ER and PR ,I take 5oomg at night with tamoxifen ,been on it since April and havn't had so much as a hot flush...not sure if it's the EPO that is helping but I don't intend stopping it to find out.

Sandra x

[Guest user]

Pauline i am going to start tamoxifen and see from there ...i hope that it will be kind to me ....if not then i will ask the doc what to do ...Christina

[hollymeg]

hi debbie, nice to catch up with you again. Glad to hear your tamoxifin isn't causing you too many problems, long may it continue. I am so confussed about the evening primrose oil. con you take it, can't you take it??????? Anyone enlighten us please?
hope everything goes ok in nov when you meet your onc regarding your secondaries

cristine and sally, hope all is well with you two as well. good idea sally starting on the first, i will need something to help me remember too, brain like a sive

Have a good weekend everyone, luv Pauline xxx

[Guest user]

Hi,Sally,Debbie,Pauline i have got my tamoxifen and i am ready to start ...thinking as 1.11 is good to remmember when i start it ...so i wish i ahve Debbie`s reaction on it Sally once you stop primrose oil i wish you are no longer having probs...Christina