Tamoxifin Buddies wanted!!!

[Guest user]

Hi All

I had a bad time on the generic Tamoxifen and seriously considered stopping taking it. I told my BCN and she said to go to the GP and change to Nolvadex-D which is a branded tamoxifen. Easier said than done. These are more expensive and my GP seemed to think she should keep the cost of drugs down for the NHS. Anyway she eventually agreed to give me Nolvadex-D for a three month trial. Within 48 hours I was so much better. Hardly any side effects at all from these new ones. The difference seems to be that the generic ones just dump all the tamoxifen into your system in one big lump. Nolvadex are slow release and so it gradually feeds into your system. It's worth a try. Another tip from my BCN. If you ask for a particular brand of the drug you have been prescribed your GP can't refuse so, if you have a similar experience to me, stick to your guns.

Best of luck

Jan xx

[Guest user]

Hi All

posted a week or so ago about my aches and pains and tamoxifen - I saw my oncologist yesterday. He suggested changing brands so I'mnow trying to track down a different one as my local chemist only does Wockhardt. He also said try taking ibroprofen regularly for a month - I've taken a couple and my feet seem better this motning. He also suggested swapping to armidex but said pains are worse with that although hot flushes were better. Not taking it is not really an option so it seems its a catch 22 situation.

On a good point - he said the side effects show the tamoxifen is working.

Hot flushes - I've tried acupuncture which worked short term but in my case I need regular top ups. However other people say it has helped hot fulushes enormously. Oncologist also suggested taking starflower capsules or evening primrose for hot flushes.

all the best

Lynn

[annalou24]

Hurray ! Well done!!!

[Guest user]

Hiya,
Thanks for the encouragement, I have just taken my first tablet!!! will report any peculiar side effects such as my head swivelling round to you.
Will keep in touch this should be interesting

Lizzie X

[chipper]

yep, go for it Lizzie !

[annalou24]

Come on Lizzie, be my twin!!! I got the same brand on the same day!Have taken it this evening just after my dinner with a *tiny* glass of red wine.
We can compare notes along the way...
Go on, go for it !

(...let me know...)

[Guest user]

Hi All,
I have been reading your posts re Tamoxifin, I have picked up my pack on Wednesday (APS) and so far have not had the courage to start taking it, I am struggling to come to terms with taking it for the next five years, I know its silly as is better than more BC =possibility of no life at all etc. its the fear of a general down grading of my quality of life over time that worries me.
I know I have got to get on with it but not without a childish sulk first.
I think toxic phlegm sums it up nicely!

Lizzie

[annalou24]

****fanfare****

Have taken it !!!

( my kids re-christened it "toxic phlegm" .....)

Anna x

[Guest user]

Shame it dosen't help with my typing!!! doh! sorry

[Guest user]

Hi
Highlandlady it could be still the s/e of chemo.I had alot of that when I was on chemo,but I've started to wear a magnetic braclet on the hand that really used to suffer the most(had numbness both hands end 3 fingers). I got the idea from Veggie as she was talking about one that helps with hotflushes that you put in your pants!!....Anyway I have woren my brcalet for the last 2 weeksand have found it really is a help.It could be that I'm getting over some of the se of chemo but who cares its not as bad!! :0))
Hope this is a weebit of help!!?

Jenhar

[gocat]

Hi Sandra. I was the opposite. I had the mirena coil about 6 years ago to try to control heavy periods but it didnt work but since taken tamoxifen (only 15 days so far lol) my period didn't come on the due date so Im hoping I will get that "side effect" of periods stopping for now.

I went to Slimmng World this morning and have lost 4 lbs this week so I guess last weeks weight gain was like I said in my previous post re PMT and some of the 4lbs lost this week was water retention.

Taking Tam in the evening and waking up with mild headache. Not sure if that's related but still no hot flushes so that's good.

[Guest user]

I took mine having just had my mirena coil out and not had a period for four years ! Unfortunately , my periods have come back and seem to be regular cycle now.Damn and blast.

Sandra x

[chipper]

take it - I took my first mid period,not sure whether it has any bearing ! xx

[annalou24]

OK thanks !!!

[Guest user]

Hi Annalou, I would just take it, doesnt make any difference, thanks for reminding me to take mine!!!!!!!!!!!!

Hope you are ok

Carol xx

[annalou24]

Hi all

I planned to start taking my Tamoxifen today but my period has just started ( a bit early). Does this matter at all ? Shall I just get on with it and take the thing ?
Thanks
Anna

[Guest user]

Hi highlandlady50,I finished my treatment (chemo,rads) in May 2008 and started taking tamoxifen,I take mine in the morning dont know if it makes any difference what time you take it. And it is only now that things seem to have calmed down and I feel more or less back to my old self apart from sweats they are really annoying but not as bad as the hot flushes I was getting,I was having one about every 20 mins but I only get a few now.I also suffered bad cramps and also would wake of a night with numbness in my hands but this has passed now, only get cramp every now and then.I do still have sligtly numb fingers and sore feet and numb toes but this is side effect from chemo (tax) not tamoxifen.Dont forget you have only just finished chemo and will still feel the effects for sometime.Rads for me was fine, I had 33, my boob became a bit sore but that was all.Wish you luck with your rads and hope The side effects you are having calm down soon.

best wishes Mel xx

[Guest user]

Hi, I have been taking Tamoxifen for 3 weeks now, and have been a bit concerned with the side effects which is why I have re visited the site. Has anybody else had any numbness in hands, every night I wake up 6 or 7 times with 3 fingers really numb, the only way I can get the circulation back is to hang my arm out the bed and it can take upto 10 minutes for the feeling to come back, I have told people but nobody really seems to be concerned. I have also had swelling of the ankles(had put it down to being on my feet all day as manager of a shop) but it would appear this is another side effect. will things get better?? at the moment I feel like im 102 not 52, no energy, aches and pains, sore feet, coldsores (came up today- brilliant). I am about to start rad treatment as well after a few weeks break after chemo, and have real worries about that as well, some people say it makes you very lethargic others say its OK, I feel bad enough now and not sure if I want to continue with tamoxifen. I also see some of you take it at night, does this help with the muscle aches. Sorry for rattling on but need some reassurance right now. Good luck to you all

[Jellylegs]

Evening all,
I appear to be OK on the Tamox at the moment!!! I took it with a low dose of asprin last night and have not had an headache today so perhaps thats the answer to the the problems I've been having.
Went to see onc today to arrange rads and also asked to see BCN to arrange to get some chicken fillets to even me up. I was told the BCN would get back to me in TWO weeks. Is that the norn. (Walsall)

[Guest user]

Hi
Thats it!!!! PMT!!! Sorry haven't had a period since April due to the chemo and I forgoton really what the symptoms felt like. I feel like I am due on,(tho not!).I do feel like I am retaining fluid,so I'll wait a few days an see what happens.
Felt starnge today as I got an app to see my onc next month before my rads and it was quite a comforting/exciting feeling...Gawd!!.
But I have also managed to walk the furthest today since my op 7 wks ago so feel really chuffed...(POOPED) But chuffed with myself!

Hope everyone has had an ok day today an felt good with the sun shinning! : )
xx

[Guest user]

Hello all, I started taking Tamoxifen last September and am pleased to report that I have had no major side effects. I did have a "hot spell" at night during that heatwave in June but I think that was due to the air temperature and not SE's!
I did have some aching in my joints and saw my Gp who said it was probably arthritis/aging - I'm only 52!( I was also panicing that it was in my bones!!) However all ok now and can honestly say that I am firing on all cylinders and been back at work F/T for almost a year and manage to do most of what I did before.
I have put on weight and am trying to loose it but it is a battle.
It's good to read how others are doing and as someone commented you only read about when things aren't too good and there are some of us who have got off relatively lightly and I have had the full works!
Big hugs to you all.
Claire x

[lolly73]

Ive always taken my APS tamoxifen in the morning. It took 3 months before I got any side effects, and after 18 months I stil just get a few mild flushes. Its not always bad!

[Gennie]

Hello ladies may I join you? I took my first tamoxifen tablet last night. APS brand. Just waiting for something to happen now, I took it just before bed and slept well. I've read so much about the horrible SE's I've felt really worried about taking it, but I don't fancy the alternative so I've got to get on with it. Must get some glucosamine, my joints seem to have got stiffer during chemo and if Tamox does the same thing I'm going to be in a rare old state!

[Guest user]

Hi Rachy,

sorry your work is tough at the moment, as if you didn't have enough on your plate.

Take care

Veggie

[gocat]

Been on Tam 14 days now. I did notice some weight gain last week but seem to have gone back to what I was pre tam. Think it was fluid retention as I kept going to the loo more than normal for a pee the last few days lol. Hope that's all it is anyhow. Was very moody/tearful when first started taking tam but seem back to "normal" again. Im wondering if when I first started taking tam I was due on and all that moody/tearful/weightgain was PMT but I never had a period probably due to the Tam and now Im back to as if I would have had a period (if that makes sense). Will know in a months time I guess.
Still no hot flushes yet 🙂

[chipper]

I would find weight gain pretty hard to cope with,if I'm really honest - my self esteem is pretty flimsy at times and that would crush me -I know that sounds overly dramatic but one of my ocd-ish things is control and perfection - not that I am in any way perfect, but I am mercilessly self critical and would find it v hard.

[Eliza]

Hi Jenhar,

you may not gain any weight on tamoxifen. I've been taking it since mid January and have actually lost some weight. And that isn't because of nausea, because I've never had that.

Eliza xx

[rachy7]

Having mood problems today. i had a terrible day at work yesterday so may not be tamoxifen based.Even thought about chucking the job in as had enough.

R

[Jellylegs]

Good luck Anna.Keep us posted. Jellylegs.

[Guest user]

Hi
Veggie I think the form we need to claim our travel back is a HC2. If you look up HC11 Form it tells you all about it...I'm still trying to find it(started looking today) my local surgery didn't know about it?? so going to try my BNC and give the DHHS a bell(joy!) and see what the say! I was tod about it when I went for my interview "getting me back into the work place" Laugh!!! I've been signed off until Feb and wont be able to do what I used to do.So I'm going to have to retrain, which I'm finding quite daunting.As I don't know what to do!!!And with myself confidence at an all time low at the mo it seems like another black hole!!.
Anyway hope that helps HC2 wise if I find out more will let you know .
Ta
Jenhar xx

[Guest user]

Hi,
Good luck Anna, I have been taking Tamoxifin for 2 weeks now and find it better to take in the morning as I find sleeping hard,and with added bonus of hot flushes,it was a no go.
I am beginning to panick about the weight,have managed to loose a 1st so far this year Reallllly not wanting to go backwards...Even more joy!!!
Has anyone had any real problems with weight gain???

[annalou24]

Hhhmmmmmm...

Part of me thinks "just get on with it!!!". Another part is somewhat shaky...
Reading the leaflet inside it didn't help!!!

Met a friend yesterday who has been on it for 2 years. She has hot flushes but not much else.

Think I might have it tonight with my dinner...

[chipper]

are you starting it straight away Anna ? lots of luck !

[annalou24]

Hi all
I have roday obtained my packet of Tamoxifen. The onc said the hospital supplied "nolvadex" brand, which I was pleased about as had read somewhere on here that it had fewer SEs. After a 40 min wait to get it in the hospital pharmacy, I grabbed my pack and ran out, as parking ticket was about to expire.

Opened up the bag at home to find it is APS brand...

Been told to take it with food. Am going to get some Evening Primrose to ease it along.

Anna x

[Guest user]

Jellylegs,hope you are feeling better now and like the rest say you have got to be good to yourself and accept that it is a mad emotional and hormonal rollercoaster that we are on,lol let me off now !
I never knew anything about breast cancer before starting on this journey and neither did my friends,we sure as hell do now tho.People just don't know or understand what we are going through therefore it is up to us to educate them. If you don't feel well and your friends ask how you are ,why hide how it really is. Your true friends will want to help you and I take the view of others who are just asking for the sake of it ,if they don't want to know how you REALLY are then they shouldnt complain when they are told. It has certainly shown the true worth of my real friends and the fair weather ones have been shown up in their true colours.I don't need people around me that don't really care how I am.

Saying all that ,I have made lots more friends since I have had my diagnosis and many on here,can't praise this forum high enough in terms of help and support and friendship,every cloud eh ....

[Guest user]

Have you tried soya milk tablets to help with the hot flushes? I have mates at work that use them, and they seem to work.
I've been on Tam for2 months, and seem to be very luck on the SE front, nothing muh to shout about. Just put on weight- gone up one dress size!
Going to have to work on that, get more exersize and eat a bit less.
Julia

[chipper]

day 3 in my tamoxifen house..am really determined to not expect any SEs (and am hoping that as I generally am never very poorly with anything then it might be a sign ) but my hands feel a bit stiff and the tops of my hips (joints) achey, but I did walk a lot yesterday !!

[Feemac]

Hi Everyone,

Just joining in if that's ok? I started Tamoxifen 3 weeks ago(wockhart) and apart from sore hips, that seems to be the only side effect. I have suffered terrible flushes and night sweats since having chemo and that has just continued, no periods since May. I have started 550mg daily of cod liver oil to help with hip pain and have been on them for a week now, must admit it seems to be working, pain and stiffness lessening. I take my tablet last thing at night so as to sleep off any initial symptoms.. felt sick a couple of nights but fell asleep soon after so didn't suffer.

I was speaking to a lady in the chemo suite yesterday whilst getting herceptin and she is having same symptoms as me but has been on Tamoxifen for a bit longer, she said that the flushes and sweats haven't gone away but have definately got less over the last few months.. goody goody!! so there's hope yet.

Lots of best wishes
Fiona xx

[Jellylegs]

Day 7 in thye Tamoxifen house
Hi, everyone and thanks for your support yesterday.
I feel fine on the Tamox except for the occasional headache,it does seem to put me to sleep though.((((hugs))) to everyone.

[Jellylegs]

Thanks everyone, Will go and put some 'Slap on' (that made me laugh Dotchas)or as I say...Where's my first aid kit? This support does make all the difference,its nice to know you are not alone and that someone understands how you are feeling...(shame we've not all got a hang over from a fantastic girlie night out but..) My friends keep saying "But your alright" so I just say yes and keep everything inside.
Moan over.

[alexamay09]

Hi All

Its the Wockhart I have this time. Think it might have been APS last time but I threw the box away. Strangely I have had fewer night flushes, though they are very hot when they come, but definitely feel quite nauseous during the day. its always hard to know whether its the tamoxifen or some other thing though. A bit of a trade off here - if I am having fewer night flushes is it worth the nausea? Think I will give these a few weeks and see how it goes. Past 2 days I've had a sharp pain under my ribs too, like a muscle cramp. Can only lie on one side while in bed!
At least the rads are finished now - return to work in 4 weeks and am a bit apprehensive about that too.
So far so good Chipper?
Jellylegs I agree that the emotional rollercoaster is more due to the trauma of what we have been through than the tablets. I am a great believer in going with the flow and not beating yourself up about emotional ups and downs.
Rachy I so relate to what you are saying about the pains. I don't know what the benefit is for me - I was just told to take it so I am!

alex
xxxx

[Guest user]

Hi everyone, can i join in?
I've been on Tamoxifen for 3 months now... outrageous flushes especially from about 3pm onwards. I usually sleep in 2 hour chunks. Recently i've been getting cold flushes especially in the early morning, anyone else get them?
Got a chillow pillow which helps a bit and i've started with evening primrose, cod liver oil and glucosamine to try and help the my joints when i attempt to stagger to the bathroom in the night, my feet just wont bend and i'm pretty stiff when i've been sitting for a while. I don't feel depressed at all but every 3/4 doys or so i'm exhausted and sleep most of the day, anyone else have this problem?

[dotchas]

Jellylegs,
((((((((((((((((((((((big hugs))))))))))))))))))
I think its normal to feel low and weepy after your op.I certainly did.I had my mastectomy last July and cried all through the olympics on the telly!
Don't be hard on yourself you have been through a traumatic time.Maybe each day just do one small thing to cheer yourself ,maybe paint your nails ,bake a cake or just watch your fav DVD.
I had a WLE 3 weeks ago and I am finding it hard to get up and hard to get out of my PJs! I am going to the pics with a friend today so better go get dressed and put the slap on!
Take care,we are here for you
Dot
xxx

[chipper]

I think I've felt very very low at times since my op (in May) - more so than my usual state,which is anxious but generally optimistic. The low bits strike every so often and I feel I'm really plunged into some horrid pit, but I generally emerge after a bit feeling ok again. I can't blame it on tamox. obviously, just post op,post dx etc which has shaken everything out of kilter. Hope you feel a bit better soon jellylegs xxx

[Jellylegs]

Day 6 in the Tamoxifin house

I feel really fed up and low, cant stop crying. Do not think it has anything to do with the Tamox,just me. It's seemed an effort to just get out of bed the last few days.Has anyone else felt like this 4 weeks post op.

[chipper]

thanks everyone - day 2...so far ok !

[Guest user]

Brilliant! you have bitten the bullet Chipper - hope you remain healthy and SE free. The evening primrose oil sounds a good supplement to take with it. Lyn x

[rachy7]

i am having alot of aches. Mainly in left hip. I do have osteoporosis there.I am paranoid that it is bone mets! I hope it is tamoxifen as has got worse since starting it. Hope the tamoxifen is ok with you chipper. At least I have not had any psychological side effects so far.The benefit of tamoxifen is 13% for me. I know it varies greatly on the grade, stage and the individual themselves as regards the benefit of tamoxifen.

Rachy xxx

[Lily200]

Well done Chipper,
you are now 60% less likely to have a recurrence according to cancer research quote 🙂
Lily x

[chipper]

sandra - mine is the Wockhardt brand too...so fingers very crossed and yes, must get Evening Primrose oil...