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Tamoxifin Buddies wanted!!!

357 REPLIES 357
sunflower65
Member

Re: Tamoxifin Buddies wanted!!!

Hi everybody

well ive settled down on the antidepressants now and have got used to the 'funny' feeling LOL.......Its really helped with the hot flushes and actually have had lots of good nights sleep for a change and would recomend them to anyone who are having horrible flushes.

Glad you all had a good time at CP. I cant find the thread Pauline, can you help !

Wilson52 its very normal to feel tearful on Tamoxifen as it mucks up our horemones, I even cry at adverts on the tv sometimes.

I had my hair cut about a month ago and its growing great guns now and have actually got a style to it all be it short and still very grey...

Rachey7 .... my skins been ok but i must say i had some horrible spots on my inner thigh right at the top on the knicker line just after i started taking Tamox but ive been ok since but they were really horrible ans quiet painful.

Oh and yes Pauline ive been bunged up since taking the antidepressants too so its back to eating prunes just like on the chemo LOL... nevermind.

Oh and im now 24 days without the cigs....... no patches or anything yeHa

Hope everyone else is fine
Love Sally xx

krisid
Member

Re: Tamoxifin Buddies wanted!!!

Hi,everybody Debbie your hair looks nice did you had haircut yet?i wonder if someone had hair colour yet?Chris nice to hear from you ...Pauline you seems to enjoy that party ...why will you have ovarys out?i am still doing ok with Tamoxifen,i am on now 3 months 1st feb will be NO4...all my best wishes to you ladies...Christina

Wilson_52
Member

Re: Tamoxifin Buddies wanted!!!

Been on Tamoxifin for 5 months and the tears have started. Normal?

Debonair7
Member

Re: Tamoxifin Buddies wanted!!!

Hi Pauline - been reading the CP threads - sounds like you all had a ball - good on ya! Is the oopherectomy a "just in case" op or has something shown up ? I had a scare last week with another suspicious lump but had it checked out and its all ok - just deep scar tissue (phew) I know you've got an horrendous couple of weeks approaching with tests and results and I am thinking of you. I didnt realise the anti depressants control the hot sweats - might look into that if mine increase any more - just about bearable at the mo. Keep that positive head on girl, lots of love xDebbiex

hollymeg
Member

Re: Tamoxifin Buddies wanted!!!

Hows all my tamoxifen buddies this week?
I need to find out if i now need to stop the anti deppresants befor i have an oopherectomy. bloody typical, just got hot sweats under control and might have to put up with them again, bet they come back with avengance and bite me on the bum!!!!

Luv Pauline xxx

sunflower65
Member

Re: Tamoxifin Buddies wanted!!!

Hi all

Thanks everyone for our aadvice. im still taking the pills as the hot flushes are more or less non exsistant now just a very slight warm feeling... still not totally happy with the way they are making me feel but will give it another week or so....... I must sound like a right moan , lol i moaned about hot flushes so was given pills to help with them and now im moaning again, is there no pleasing me LOL.

Hope everyones ok
Love Sally xxx

rachy7
Member

Re: Tamoxifin Buddies wanted!!!

Also has anyone had problems with their skin ? I used to gfet really bad acne until I was in my thirties, it seems to have returned but in an embaressing place. My skin is very itchy. i am seeing my BCN next week and will discuss all this with her.

R xx

rachy7
Member

Re: Tamoxifin Buddies wanted!!!

Hi Everyone, I have been on tamoxifen for six months now and find that I have alot of aches and pains especially in the morning. I hoped this would lessen with time but it is getting worse. It is really getting me down. I have a day when i try to be active and walk, do things in the house etc but the next day I really suffer with pain in my joints which is disabling. Anyone who has been on tamoxifen for over a year had these problems and if so how do they manage them ?

Rachy xx

only1chris
Member

Re: Tamoxifin Buddies wanted!!!

Interesting pauline - been taking 2 weeks and at first the violent opposite of constipation! Settled down now - but still far from constipated. Just shows - as so many say it affects us all so differently.
Hope everyone is managing - we have to don't we?
Love C

hollymeg
Member

Re: Tamoxifin Buddies wanted!!!

Sally i have been taking the same tablets for about a week. not had the spaced out feeling but am constipated! must say the hot flushes have nearly gone, just got a bit warm in bed this morning. Well worth a try!!!!

Luv Pauline xxx

Tillyx2
Member

Re: Tamoxifin Buddies wanted!!!

Hi all of you. I am new to this site but not to Tamoxifen although I was taking Nolvadex D which I have just found out today is to be discontinued.It was whilst doing some internet searching that I found this site. I started my tamoxifen in January 2008 after lumpectomy and node clearance, chemo and radiotherapy. I had horrible side effects and after some research found out that Nolvadex has side effects which are a bit more manageable. I could feel a difference in about a week so was pleased to be prescribed an alternative. Even so there were still the painful joints - I thought when I was reading some of the posts that I had actually written them - the feet not working in the morning and walking down the stairs like a 90 year old etc etc.Oh, and those hot flushes - duvet on, duvet off and husband shivering in sub zero bedroom. I hadn't realised that the light headedness and a feeling of "not being there" were also side effects. Anyway, I rang the chemist as I thought they had delivered the wrong medication and had a discussion with the pharmacist - I think it all boils down to costs as Nolvadex is dearer. He said I could try ringing round various other chemists to track down any supplies. I think I'll give the Tamoxifen a go - ha ha - what's the alternative. Pharmacist said if I couldn't get away with the generic Tamoxifen he would let me have other brands to try to see if I could cope with them.

kittenkat
Member

Re: Tamoxifin Buddies wanted!!!

hi sally - is it venlafexine (efexor and other names)?? if so it goes after a few days of noticing - I found - or it can make you a bit anxious to start with...mary x

corydory
Member

Re: Tamoxifin Buddies wanted!!!

Hi Kittencat
Great to hear from you. Sincerely hope you are doing well. XXX Yes we are now 12 months on. Amazing how time flies.
I am sitting here now with a back ache from hell. Have been doing aqua fit and that seems to help a lot.
I know its not Tamoxifen and Your right it could be the results of Arimidex but I suspect its more likely to be because I have been walking to and from work in the recent snows (approx 6 miles a day) so not much really wrong with me eh!!!! Still - after arimidex I am a bit fed up of having pain!
Now 10 days into tamoxifen and apart from this stupid back ache I feel fine.
It's always very difficult with these meds to know what might happen cos everyone experiences them differently, but I guess the good news is that there is a choice and we do get to try other meds. Not much fun, but at least its there for us.
Well Monday calls - role on retirement, cos let me tell you, thats what I intend to do and I also aim to achieve my lifes abition to live till I am 100 and get shot by a jealous wife!!! lol XXXX to all.

sunflower65
Member

Re: Tamoxifin Buddies wanted!!!

Hi all

Lorna, youre on the same pills as me, did you get the 'spaced out' feeling when you first started to take them, and if so how long did they last, must say they have more or less stopped the flushes though.

Hi Debbie, must say your looking fab there and lovely to hear from you again

take care all Sally xxxx

Daisy_do
Member

Re: Tamoxifin Buddies wanted!!!

I have been on Tamoxifen since June 2009 and have aching joints - especially ankles and fingers, nausea (still) and tiredness. I have also had a rash appear (bubbly skin) around my mouth and nose area for about 5 weeks now.

I had my first 6 month check last week and the doctor said that it is Tamoxifen but likes that I blame my new job and my GP is giving me hydrocortisone cream 1.0% and a nightly pill.

I wondered if anyone could advise me further as I would like to get off the cream and tablet.

I also have psoriasis and It has got worse and the docs dont worry about it.

Thanks to all and dont worry too much about the Tamoxifen as we all seem to be different and have different symptoms - I no longer have flushes and my brain is a bit more turned on now so I think there is a break through moment for us after 3 months. I feel so much better now I know what I am left with and work to find solutions.

Delphinex

Debonair7
Member

Re: Tamoxifin Buddies wanted!!!

Hi Sally, like the sound of them pills (lol) - give it a bit longer, the spaced out feeling should settle down hopefully and what a joy to be rid of the hot flushes ! Bye 4 now xDebbiex

seasider
Member

Re: Tamoxifin Buddies wanted!!!

Hi all, i,ve been on tamoxifen for 3 1/2 years now,put on about a stone at begining but have now lost it again, have had terrible night sweats and hot flushes and been on veniflexin for a year which have helped with these, so much so that i carn,t go a day without it as they come back with vengance,got to stay on it for at least another year,will be off tamoxifen in 18mths which carn,t come fast enough,Doc,s dont tell ya all the side effects do they,
best wishes to all
Lorna xxxx

sunflower65
Member

Re: Tamoxifin Buddies wanted!!!

hi all

I got some pills from the doctor which really help with the hot flushes but they make me feel really chilled out... too much so for my liking... not sure what to do...ive only been taking them for 4 days and was wondering if anyone else has been taking antidepressents for the hot flushes and if the 'spaced out' feeling goes.

hello and welcome to any new comers to the thread.

hope everyones ok
Sally xxx

kittenkat
Member

Re: Tamoxifin Buddies wanted!!!

Hi Denise - just wanted to say hello - think we had our ops around the same time - mine was jan 28th 09...its early re the tamoxifen yet and the pain could be from the arimidex as it seems to give a lot of people bone/joint pains, as does tam but not as much (??) I think this is a really hard time for us when the active treatment had stopped....((((hugs)))) mary x

corydory
Member

Re: Tamoxifin Buddies wanted!!!

Hi all
How brill is this site??? I have skipped in and out of this site so many times in the past 12 months I wish I had a pound for every time I have done it!! Along the way I have posted firstly in the 'have I got breast cancer' then in 'Newly diagnosed', then in 'undergoing treatment hormone therapy' (arimidex) and now in 'undergoing treatment' (Tamoxifen).
I did Arimidex for 7 months. For me it was incredibly painful. Also had depression, mood swings etc. and worst of all..... no sex (ok so what if I am 54 - I am still alive!!!) Now on Tamoxifen. Prescribed by BCN following a discussion where i had stated that after stopping the Arimidex for a couple of weeks I felt muchly better. Now 7 days into Tamox and feeling ok. Fingers crossed... My main worry is that I have had back ache now for about 4 months and along with the Arimidex pain, since diagnosis I don't seem to have been without some pain or another....is this normal please? XXXX Denise

jane333
Member

Re: Tamoxifin Buddies wanted!!!

Hello all so many post to read on tamoxifin like me the joys of hot flushes we all have ahh and thinking how am i going cope in the summer.I started them nov 09 but still having priods and worrie i have to stay on them longer than 2 years then theres bigger danager of long time use get more side effects.Other than hot flushes all been ok for me and i always forgetting to take them same time of day lol.Im 46 and had breast cancer feb09 op march 09 had left breast removed and 2/20 nodes show cancer thankfully.ive Had chemo yuk yuk and radio and now pills but theres life after bc at least we save money on c/h bill. jane x

julia_b
Member

Re: Tamoxifin Buddies wanted!!!

Been taking Tamoxifen for 6 months now, had the night sweats, night cramps and have put on a fair bit of weight. Now just as I've gone back to work the nausea and reflux have started. Typical!

I suppose the only plus, is that I'm not eating much, almost everything gives me guts ache. So the weight gain is looking a bit less of a problem. I seem to be existing on bananas, eggs and mashed potatoes.

I've even been seen to drink herbal tea! Not my usual strong(tea bag left in) cuppa. If anyone is interested Ginger and Lime tea works well for me.
Feel better now that I've had a whinge!
Julia

KatieF
Member

Re: Tamoxifin Buddies wanted!!!

Well, I've done it! Managed to get the first pill in to me at last!
Now a fully fledged member of the tamoxifin club. No nasty reaction as yet, fingers crossed nothing happens in next 3 days... Thanks to all of your comments on this thread will no what's normal SEs.

sunflower65
Member

Re: Tamoxifin Buddies wanted!!!

Hi Jayney

Im dead on my feet today as i imagin you are too.. well i managed to see my GP today and he's given me some antidepressants to try they are called Venlafaxine, 1 a day for a week and i can up them to 2 a day after if i need too. Im now at the stage where I'l take anything that might help.Ive got some sleeping pills too so im having one of those tonight as well, I dont like taking them but needs must....

Im not even thinking of coming of the tamoxifen as i would rather live and put up with the hot flushes than not have the pills and all that that might bring.

Ive had trouble sleeping since my youngest was born and i have found something that helps (none medical) its Audio-books, its like someone reading you a bed time story and does work and so when im awake in middle of the night i pop that on and even manage to doze as well.I get mine from my local libary at a small charge for 3 weeks.

Ive been taking evening primrose oil since i started tamox in october, a high dose but dont seem to be helping much but im loathed to stop taking them just in case.ha ha

I start Herceptin on thursday too......... hope i dont get any side effects from that as im all side-effected-out now.

hope your doing ok and keeping the exercises up

Love Sally xx

truffle_shuff
Member

Re: Tamoxifin Buddies wanted!!!

do feel for you, nothin worse than lying awake in the night, and the not being able to function next day. im on Zopiclone, which I find ok ,although I think my body has now got used to them.

wishing you both restfull sleep

take care xx

Jayney
Member

Re: Tamoxifin Buddies wanted!!!

Sally - I'm in your camp I'm afraid. Can't remember the last time I had a decent nights sleep and its making me feel really pooy! I'm not good with no sleep. Took a tramadol last night, went off for 1.5 hours then wide awake! Nightmare. Seen GP, she prescribed Clonidine, although says no guarantee that they will work and effects can wear off over time. Loathed to take them just yet as hoping mine are chemo induced and they will settle. Also another drug to put into my alreay overloaded system. I hope they settle but may be worth talking to GP. Evening Primrose Oil???? x

truffle_shuff
Member

Re: Tamoxifin Buddies wanted!!!

sorry to hear you had awfull nights sleep , to me is the greatest of healers.

I took the plunge last night and took first tamoxifen, slept like a log. Woke up this motrning and the snow is melting!!!!, wow they are good arnt they. joking apart I know its early days but thanks to this site took the first one

keep warm , take care xx

sunflower65
Member

Re: Tamoxifin Buddies wanted!!!

Hi All

Thats it.. last night was the last straw i hardly slept again, feel so awful this morning.. im phoning my GP and getting something to help with flushes, I cant remember the last time i had a half decent sleep and this tiredness is making me weepy and grouchy.

Hope everyone else is ok

love one tired and fed-up Sally x

kittenkat
Member

Re: Tamoxifin Buddies wanted!!!

this site is the best tonic - I too went for the pills, well I was on them to start with for pmt but they took the edge off the panic & anxiety....stay with us though - some of the stormriders have just finished chemo too....we have family in manchester - brother in Salford and mum in law in Didsbury although from Whitefield for years before. My hubby's aunt was diagnosed last year too, she's in Bury direction, she got off with surgery & rads but struggled with wound problems etc....mary x

truffle_shuff
Member

Re: Tamoxifin Buddies wanted!!!

Hi kitten cat.

thanks for your warm welcome. I had mast with immediate reconn on 28 may one lymph node involved. lobular grade 2, had e cmf finished on 28 december. not to bad except for developing a chemo baby belly, nothing to do with all the xmas cake devoured.

It must be end of chemo nerves, im 54 but they put me on tamox for 12 months as I had one period on chemo , not had any for 2 years. Just goes to show one little egg hanging on in there just in case. the epi soon got rid of that.

Im in manchester, all snowed in and bored, but bank balance ok, in need of infusion of shopping , that will put be back on the ball !!!!

Thanks for support it rearly is invaluble isnt it, remeber when i was crying down the phone to GP: to give me some pills for my nerves, he just said look to family and friends they will give you more support than the pills...............managed one months supply out of him, but he proved right in the end.

tek care , keep warm xx

kittenkat
Member

Re: Tamoxifin Buddies wanted!!!

hi truffle - just said hello on the stormriders thread so good to see you! My onc told me to start the tam with my rads - think they all say something different! But don't worry - you soon get into it - I had very bad flushes for a while but they settled but then that could have been s/e of the chemo as I had them then too.....what chemo did you have? I was diagnosed just over a yr ago on jan 7th, wle on 28th jan, chemo started on mar 3rd ish - 3 fec 3 tax then rads finishing it all mid august.....you're on the last leg of the treatment run now so well done!! mary x
ps feel free to add me as a contact/friend if you want a bit of support - where are you? I'm shropshire/mid wales way....

truffle_shuff
Member

Re: Tamoxifin Buddies wanted!!!

many thanks for all your comments, feel a lot easier now on taking them, but isnt is strange ,we go through the ops chemo and rads then get the collie wobbles at the last hurdle, .over a pill, even though it is a vital part of treatment,

off to do the ironing now if i can get the courage to go into the cold garage for the ironing board,,,,,,,,,,,,,,,,,what a wimp

keep warm xx

only1chris
Member

Re: Tamoxifin Buddies wanted!!!

Hi Started my tamox on Tuesday; also scared re side effects but nothing noticeable MAYBE a bit sweatier at night so go for it! My btand is CP pharmacies ...

Of more interest is fact onc didn't state dose when he wrote to doc and doc decided 10 mg. Thank heavens for this site or i wouldnt have thought twice and would probably have carried on with 10 ad infinitum telling docs when they asked that "i am ok on tamox"
Luckily i asked pharmacist who said usual dose was 20 but sometimes 10 was prescribed... so i checked with onc. Find it rather worrying that when a dose isnt specified a doc invents one; and that he doesnt even invent the usual one.

Anyway good luck to us all on this. Actually i have strated to worry that i am not getting side effects "is it working etc?" Cant be happy can we?

Love C

Bubs1955
Member

Re: Tamoxifin Buddies wanted!!!

Just over 2 years ago I started on Tamoxifen and was the brand stocked by Boots at that time was CPS. Then I switched to Nolvadex after 12 months (no remarkable improvements in side effects, I have to say).

Then onc switched me to Arimidex last April. I stuck it out for 3 months, but the aches and other side effects were just too bad to tolerate, so I went back on Tamoxifen.

The brand stocked by Boots was Wockhardt, and I have to say that all side effects - bar a little early morning stiffness when walking - have vanished.

Whether this is to do with the formulation of the drug itself or the fact my body has adjusted to Tamoxifen after 2+ years I do not know.

chipper
Member

Re: Tamoxifin Buddies wanted!!!

hi - truffleshuffle - my tamoxifen is Wockhardt and they have been fine - no SEs at all
I'm also on venlafaxine (just been on it for a month so far - prescribed for anxiety/Ocd)- first pack was Alventa XL but this new pack is Vie Pax - my dose is now upped to 2x75mg from the original 75 mg a day...so far so good.

evie2007
Member

Re: Tamoxifin Buddies wanted!!!

I think thats a good idea. i wanted to feel well before i took them so i knew was SE's they caused. i also wanted to feel a little but more like me before i started being medicated again!
good luck
S

truffle_shuff
Member

Re: Tamoxifin Buddies wanted!!!

thank you, I just feel so full of the last chemo, may just concentre on geting back on form this week, then I will go for it

take care , keep warmxx

evie2007
Member

Re: Tamoxifin Buddies wanted!!!

TS i sat on mine for 3wks! was so worried about feeling ill but to be fair I have had very little SE's and certainly nothing that has made my life difficult.

Give yourself a break if thats what you want but try not to be too scared of it as you maybe just fine.

S

truffle_shuff
Member

Re: Tamoxifin Buddies wanted!!!

Hi, can you please help, i have got my first packet of tamoxifen, should have taken them on friday but thought couple of days break would be ok, to be honest bit scared of getting side effects when just getting last bit of chemo out of my system.

I have been prescribed ,wockhardt,has anyone any experience of these

never thought I would be so scared of taking a pill ,just dont want to feel ill..........

hollymeg
Member

Re: Tamoxifin Buddies wanted!!!

Thanks for that mary, very useful. makes me fell better about them....if i am ever brave enough to start them. Will let you know how i go on if i decide to take them, i start work next week so need some decent sleep!
luv pauline xxx

kittenkat
Member

Re: Tamoxifin Buddies wanted!!!

Pauline - yes its efexor - the active med is called venlafexine, your gp will prescribe it - I only get monthly scripts too which is a nuisance having to remember to order them and collect them as I live a good bit away. Its a newer antidepressant and not addictive like the older tri-cyclics or tranquilizers are - they have helped me no end, I'd advise anyone to try them if their dr thinks they'd benefit. I'm on efexor xl which is basically a slower release tablet which is considered better if it makes you feel a bit sicky (the ordinary ones might do but might not) mary x

sunflower65
Member

Re: Tamoxifin Buddies wanted!!!

Hi Pauline

I talked to my onc about going on those pills you mentioned but decided to wait a couple of months as she said the flushes can die down after the 1st few months and as im already on anti-depressents i thought i'd wait...I'l be interested to see how you get on with them though.

Hope your doing ok.... like the hair

love Sally xx

hollymeg
Member

Re: Tamoxifin Buddies wanted!!!

Hi mary my onc gave me 3 weeks of Dopupal which when i googled it was also called efexor and loads of other names. Bit unsure about taking it. Will my own doc continue to perscribe it to me do you think. Is it addictive? My doc told me the other day they are not allowed to prescribe more than 28 days at a time now caus i asked about a couple of months tamox but she wouldnt.

Luv everyone, Pauline xxx

jenhar
Member

Re: Tamoxifin Buddies wanted!!!

Hi All,
Its been a month since I was last on, and since then....Was taken off Tamoxifen due to the SE beginning of Nov but had my 1st period since starting and not allowed those at the mo, so have been put on zoladex, had my 1st injection on 23rd Dec so far so good and start Armidex with next injection. But today I started another very heavy period only 15 days since my last 1... I thought that the zoladex was suppose to stop them, or is it too soon yet or is this my body just " clearing" itself out again!! Has any one else had this ??
love to all
Jenhar
xx

kittenkat
Member

Re: Tamoxifin Buddies wanted!!!

hi Pauline - what did you get put on? Our gp only does 1 month tabs and it s a real nuisance every month. Liz - you sound like you're really suffering - sometimes we just need a bit of extra support, if you had high blood pressure you take the things that help, same with feeling so low/anxious/depressed etc we need some treatment sometimes - sometimes long term and often not but its worth seeing your gp and having a chat. The efexor antidepressant really helps the s/e's of the sweating/flushes/mood swings etc for me.....mary x

Debonair7
Member

Re: Tamoxifin Buddies wanted!!!

Hi Liz, - sounds like you are really suffering poor love - why not see your GP for some help and advice - if you read back through the thread there is lots can be done xx dont suffer in silence xx

Frizby50
Member

Re: Tamoxifin Buddies wanted!!!

Tamoxifen

Hello All

Not good with computers. Commenced tamoxifen mid Nov and an unbearable. I am on my own with 2 teenagers so you can imagine how well it's going in our house. I feel irritable, irrational, tearful, dry skin, spotty skin, exhaustion. Trying very hard to sort myself out but my concentration is dreadful and I feel almost confused! Hope this posting works.

Liz

hollymeg
Member

Re: Tamoxifin Buddies wanted!!!

Mary, my onc prescribed me an anti depresent today for my hot sweats. i feel if something iss ok to take and makes life more barable i am willing to give it a try. As you say, can always stop it if it doesnt work. What i was wondering was, she gave me 3 weeks worth, what happens then? do i get them from the doc? must do i suppose. Nice to talk to you again, hope your doing ok luv pauline xxx

kittenkat
Member

Re: Tamoxifin Buddies wanted!!!

hi Em - I know what you mean - my periods stopped half way thru chemo, 3 fec 3 tax and no more for 6 months - to the day!! It seems pretty common for them to come back....re the moodswings etc I take Efexor XL which is an antidepressant that is ok to take with tamoxifen (some aren't recommended) and it helps with the sweats too - saying that since my period decided to come back or 2 wks before the night sweats got horrendous again....but for me the depression I had and the awful anxiety that overwhelmed me many a time was the worse thing - even worse than chemo - and I never want to feel that way again....if you try something and it doesn't work you can always stop it, better than wondering if it would help or not maybe.....good luck...mary x

Emelf
Member

Re: Tamoxifin Buddies wanted!!!

Thanks Sally will look into that. definiatly dont want to go on anti depressents. Hope someting helps!

xx