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Tamoxifin Buddies wanted!!!

sunflower65
Member

Re: Tamoxifin Buddies wanted!!!

Hi Emelf

Sorry to hear that your having a bad time emotionaly at the mo. Ive been taking tamoxifen since middle of oct and i too have found tht i get ratty more often and often feel like crying for no apparent reason.

I saw my onc today and she advised me to try a herbal remedy called Black Cohosh it can help with hot flushes and mood swings too, she also said that if that dosen't work there is an anti-depressant that they can perscribe that helps with the effects of tamoxifen too. Ive been trying evening primrose oil for months now but I dont think its made alot of difference for me.

I dont know if this is of any help to you but i hope it helps knowing that your not alone in this.we can be cranky altogether on here LOL

All the best Sally x

Emelf
Member

Re: Tamoxifin Buddies wanted!!!

Hi, I have not been on here for a long time. I was diagnosed with BC last year. All treatment finished apart from on Tamoxifen for 5 years. I have been on it since May. I didnt get the physical side effects as my my periods stopped with chemo so had the hot flushes then. My periods then came back around July time.

What I do seem to suffer with is and especially a week before my period is depression. I am also very irrational, irritable, over sensitive and not very nice to be around. It can last for 2 weeks. Im thinking its a combination of PMS (but so much worse then ever with my periods coming back) and my hormones being suppressed with the tamoxifen.

I hate being this way and by partner is really having to put up with a lot! my libido is non existent too and get very insecure about our relationship especially in those two weeks were ever emotion is heightened.

Im guessing there isnt a lot I can do and I have to ride through it? Is there anything herbal or natural I can take to help me? Im not going on anti depps as tried it in the past and they really didnt agree with me.

Any advice would be very grateful.

Thanks Em

truffle_shuff
Member

Re: Tamoxifin Buddies wanted!!!

hope you have a great time, we have spent lots of weekends when the children were small and grown up to, we always had a ball, love the fact that everytime you go they have updated the areas so you never get bored and no where looks shabby.hope you manage the rapids and night swimming always my favorite with eating , and the spa area, of course.

one camping tip, we found ( and I may be preaching here), is that a box of matches in the toilet is invalualbe, one strike and the odour has gone, I would defo need it with the chemo wind at present

have a ball .no have a few

take care xx

hollymeg
Member

Re: Tamoxifin Buddies wanted!!!

oh just thought i would mention, as you may be aware a few of us are going to center parks, nottingham, on the 15th for 3 nights. there is one place going for grabs if anyone is interested. you would be more than welcome. let me know on here or pop over to our centerparks thread. would be a shame to leave one space empty on what is going to be a brilliant weekend....

luv pauline xxx

hollymeg
Member

Re: Tamoxifin Buddies wanted!!!

Happy new year to all my tamoxifen buddies, how you all doing?

me, so fer so good, few hot flushes but no more than i had from the chemo i think, keeping fingers crossed

luv pauline xxx

krisid
Member

Re: Tamoxifin Buddies wanted!!!

Hi,everyone i havent got the problem with waight gain not to annoy you girls i lost stone but i feel ok ....dificult lifting ny son in his car seat,and out of the bath that is all....i have very dry skin and i am using that aquious every day ,cant do without skin is soooo dry that is cos of tamoxifen reduce estrogen ...my hair isnt v good either but is again up to estrogen as well sometimes i think that regrowing will take year ....wich is pain...i am now to start 3 th box of tamoxifen....all the best to all tamoxifen ladys Christina

sunflower65
Member

Re: Tamoxifin Buddies wanted!!!

Hi All

ive put weight on too and im now getting caught up in a viscous circle, i feel fed up cos im fatter and therefore I eat and the cycle carries on, Im fed up now looking like this and just want to be the old me again.

Ive also noticed that my granny hairs are worse, im now on box no3. the hot flushes ae still bad too.

sorry for the moan just feeling fed up today

Sally xx

Debonair7
Member

Re: Tamoxifin Buddies wanted!!!

Hi Libby, yes I have also gained weight (about a stone). I am going to try to lose a bit in the new year - used to swim a lot but didnt swim throughout my chemo but now I have got some hair back feel ok to take it up again. It is a known side effect but have the investigations to put your mind at rest. Hope all is ok for you x

libby51
Member

Re: Tamoxifin Buddies wanted!!!

HI
Im on aps tamoxifen, I have gained a stone since march this year, all clothes had to be bought in a size 14 and now there too tight.
I am at the end of my tether, very bloated, look pregnant {im not }
Can only eat a little at a time or feel as if I can't breathe, worried it's something else going on doc sent me for ultrasound that just showed a cyst, and ca125 blood test 19 doc says that's good as it should be under 35, now shes referring me for a gynae appointment, don't know what shes expecting to find, but I never felt this bloated before tamox, anyone else having trouble with weight gain and bloating.
Libby xxx

hollymeg
Member

Re: Tamoxifin Buddies wanted!!!

lazydaisy, i will have been taking mine for 2 weeks on tuesday and apart from a sore boob (i only have the one) for about a day, around day 3, i havn't had any other SE so far. Good luck with yours and enjoy your tablet free xmas. Happy xmas everyone, luv pauline xxx

Lazydaisy1
Member

Re: Tamoxifin Buddies wanted!!!

Hi Girls I'm about to start my Tamoxifin on Tuesday - nice belated Christmas present - any tips gratefully received! Hope everyone had a great christmas - Lazydaisy1

Debonair7
Member

Re: Tamoxifin Buddies wanted!!!

Just wanted to wish everyone a happy christmas and a healthy new year and one I am sure we will all be glad to see the back of! Thanks for all the support, advice and comfort you have given to me - you are all amazing and deserve nothing but the best! Here's to us all x debbiex

krisid
Member

Re: Tamoxifin Buddies wanted!!!

Hi,Sue my son is growing up fast very tall ....still in nappy !!!5,01 he will start nursery twice week ,try to get him with other kids ,he has ben v healthy till now so will see when he will start nursery ...winter is always full with colds and bugs...Everyone have good Xmas and better New Year...Christina

KatieF
Member

Re: Tamoxifin Buddies wanted!!!

Oh god poor you Rachy, took me 3 hours to get home (normally 20 mins!!). But at least I was in a warm car... It was lovely to see you though. Have a lovely Christmas and I'll see you in the new year.

x x x

rachy7
Member

Re: Tamoxifin Buddies wanted!!!

Hope Thursday goes well for you. I was stuck in Winchester for 3 hours because of the weather ! OH tried to come and get me but was in enormous traffic jam. Nice and warm now though. Happy Christmas to you and your family and see you in 2010.

Racy xx

KatieF
Member

Re: Tamoxifin Buddies wanted!!!

Thanks Christina... nervous about Thursday but determined to give it a go. Seeing Onc before so I'll ask her % benefit and then go for it!

Happy Christmas everyone x

hollymeg
Member

Re: Tamoxifin Buddies wanted!!!

sally, cristina, sue, katie and debbie thank you for all your advice, thought i would update you, the breast pain only lasted one night and into the next morning, then went away again. felt better once i knew it was a side effect. Hope your all coping nicely and ready for a restful christmas take care luv pauline xxx

evie2007
Member

Re: Tamoxifin Buddies wanted!!!

Happy Christmas too all.

Cant say Tamoxifen has made much difference apart from random spotting yesterday so hope nothing else will develop now.

Christina girls are good. Both been very ill recently with hand foot and mouth then eve had tonsilitis and then pnuemonia BUT taking them out of creche has made a difference bug wise so christmas should be uneventful. Hows you lovely son?

Anyway, take care girls and try to have a nice christmas drink ( wine gives me the flushes!)

S
XX

krisid
Member

Re: Tamoxifin Buddies wanted!!!

Hi,Sue is nice to hear from you ...when did you finish your chemo?how are the kids???

Hi,Katie so sorry that you had allergy on your chemo and had to stop that ...the alergy reaction on tamoxifen will not be same if you are to have it is not entering your body with blood stream direct and chemo was too totoxic...alergy reaction is 2 kinds early and late early is 24 hrs after tabl ,late one maybe up to 3 days later...so if you are not to have early one wich is more agressive late one maybe just rush or feeling unwell BUT iam sure they can give you antiallergy tabl ...anyway is worth trying tamoxifen ...Pauline .Sally and Sue have nice Xmas ....

Debonair7
Member

Re: Tamoxifin Buddies wanted!!!

ans the same to you sally, lovely to hear from you again xx

sunflower65
Member

Re: Tamoxifin Buddies wanted!!!

Hi everyone

Ive had problems acessing the site as my service provider mucked up apparently.

Im now on 3rd box of tamofin and apart from the hot flushes im doing fine.Ive got lots of hair about 3cm long now and eyelashes back fully nearly.

As I probably wont be on again for a week as im at my OH today and using his pc I would like to wish you all a happy christmas and a very healthy and happy new year. Hope you all have a fab time and over indulge we deserve it after the year weve all had.

Take care big hugs

Sally xxxxx

KatieF
Member

Re: Tamoxifin Buddies wanted!!!

hello Ladies can I join you here? I'm having a panic!!
I'm to start Tamox next Thursday (yep, christmas eve). I should have started 6 weeks ago but I've had allergic reactions to everything since my re excision and Onc wanted to discuss with the allergy clinic that I'm now referred to. My Doctors wanted me to take it in hospital after I said how worried I was about having a reaction ( they especially want me to go in since I had a reaction to the flu jab when I never had a reaction before) and the Onc said that as tamoxifen was slow releasing she wanted to make sure 1 day would be enough as the reaction might not come until later...

Now I'm having that heart bumping panic... I'm to go in hospital for 10am and have my first tablet then wait on the ward. They're being great but what if the reaction doesn't start til the following day?? Christmas day! I only had the message from the Onc's sec so haven't discussed with the Onc herself yet - does it mean they don't expect reaction the following day now?? My BCN said to start on a Monday so that someone's around all week for me?? Unfortunately Onc's not in and sec said they need me to start.... aagh. Can I leave it for another 2 weeks after xmas??? I'm going to be away or with visitors tl then.
Worried to take and worried not to take as had to stop chemo beacuse allergic reaction could kill me so are there any rogue cells running around???
sorry rambling... just had to say it out "load"
Reading your posts has helped - at least I'll not be worrrying about the "normal" SEs! Thanks

hollymeg
Member

Re: Tamoxifin Buddies wanted!!!

Cristina, i think this must be the standard look for post chemo babes, can you imagine what 20 post chemo babes will all look like together at center parks mmmmmm will share the pics with everyone luv pauline xxx

hollymeg
Member

Re: Tamoxifin Buddies wanted!!!

sue we started together then, my 4th tonight. Hope your doing ok

Christina, thank you for that, feel reasured now. not had time to check my leaflet today so you saved me the job thanks for that.

Happy pill popping, luv pauline xxx

evie2007
Member

Re: Tamoxifin Buddies wanted!!!

Hey there. Ive taken my 2nd tamoxifen after delaying things for as long as possible and feel fine.. I do remember saying that after my first chemo tho so will wait and see!!!!

S
X

krisid
Member

Re: Tamoxifin Buddies wanted!!!

Hi,Pauline breast pain is on the leaflet as SE so it is normal ,i dont have it .I started 1 november ....like your hair mine is same as yours today i used the hairdryer for 1 st time for months now....all the best Christina

Debonair7
Member

Re: Tamoxifin Buddies wanted!!!

Hi Pauline, I don't get pain in the breast but I do get a funny uncomfortable sensation at various times - like nerve endings are jangling or something! Because the drug is affecting hormones the breast pain is hopefully nothing to worry about - hope you get some more replies to put your mind at rest - if not - get back to the GP for advice xx lots a love debbie x

hollymeg
Member

Re: Tamoxifin Buddies wanted!!!

well this is what this thread is ment for, i need some advice please. I have taken only 3 tablets and had terrible pains in my one remaining breast all last night and it is still there this morning. Had a good feel, nothing there thankgoodness so i was just wondering, is this a normal side effect of tamoxifen and has anyone else experianced this. need so reasurance i think. Thanks ladies, luv pauline xxx

Debonair7
Member

Re: Tamoxifin Buddies wanted!!!

Hi Pauline, nice to catch up with you again. I felt like that at the beginning (started it on 1st Sept)but it has been used for a long time and I am hoping you will be lucky like me and barely notice the SE's. I caused a laugh in school today - it was snowing and I was standing outside with a big red face trying to cool off - I feel it could be worse but like you hope it doesn't result in anything nasty. All the best, let us know how you get on with it, love xdebbiex

hollymeg
Member

Re: Tamoxifin Buddies wanted!!!

Well i joined your gang last night ladies. finished rads on monday and started tamoxifen yesterday. I sat and read the leaflet that came with it and oh my god, looks like we can't win either way, damed if we take it, damed if we don't. oh well hopefully i will be one of the lucky ones......... luv to you all, pauline xxx

julie_loolie
Member

Re: Tamoxifin Buddies wanted!!!

Hi Christina/Nikiya - Thanks for your replies, sorry to sound paranoid, I do feel much better now having read all the comments. I have a follow up mid January so will talk it all through then but will take some painkillers and enjoy Christmas!Julie x

krisid
Member

Re: Tamoxifin Buddies wanted!!!

Hi,Julie,and Nikyia i am on second box of TAM and i have back pain it start it while on rads and it was on my rads side like ribs pain than move to my back and it is definatly back pain now wich is bad afternoon so i have to lie for while yest i had ibuprofen and it helped so i will see today i am more tired now so i dont know what to linked that with rads or tamoxifen.....i know what you say Julie thinking that CA is back on your bones or so this is going to be our life from now ...so we have to learn how to avoid those negative thoughts...my folow up app is 30.12 so iam going to talk about it ...mind you if you are premenstrual and tamoxifen will cause you menopause is linked with bone pain cos of bone get thin -osteoporosis i am not saing hapened already i just think of why we can have these pains.....other suggestions??? take care Christina

Nikiya
Member

Re: Tamoxifin Buddies wanted!!!

Hi Julie,
As I say in my post, I have back pains (and other rheumatic type pains), but not chest pains. They started about two weeks after taking T and have become worse... I just take Ibuprofen and paracetamol. That helps.

julie_loolie
Member

Re: Tamoxifin Buddies wanted!!!

Hi, I am on my second box of Tamoxifen. Just wondered if anyone else had experienced chest/back pain, as it has only been happening for the last two weeks or so I am paranoid that the cancer is back and spreading.....Before cancer if I felt ill I just got on with it, now I feel like every time I get any aches or pains I fear the worst. Am feeling very tearful tonight and in need of something positive!

debs
Member

Re: Tamoxifin Buddies wanted!!!

I saw onc last week after being on tamoxifen for 6 weeks as a follow up and asked if the hot flushes go on for the whole 5 years, she said they are usually worse for the 1st year and then calm down!!

Funny Ive just swopped to taking them in the evening as they make me feel queasy sometimes!!

love to all fellow tamoxifen takers!!! Debs xxxx

sunflower65
Member

Re: Tamoxifin Buddies wanted!!!

Hi all

Since i changed to taking it in the morning i am sleeping alot better and the flushes are worse during the day and early evening but i can cope with them better.

I also wonder if i will have them for the next 5yrs or just until menopause is over....I take it thats what im going through.

Thanks Christina they are easier to deal with during the day, saves putting heating on. LOL

love to all
Sally xx

Nikiya
Member

Re: Tamoxifin Buddies wanted!!!

I started Tamox on Sept 24, always in the morning because it is the time when I know I won't forget. I never had hot flushes but then I am beyond menopause. However, bad SE seem to be piling up to the point I am hating this little pill: exhaustion, sleep `problems, back and joint pains, constipation. Arghh!! Do I have to be 5 years like this?? Does it get any better?

krisid
Member

Re: Tamoxifin Buddies wanted!!!

Hi,Sally i hope your flushes are better now....Debs i was like you waiting for 2 weeks till i got brave to start Tamoxifen ...now i am on my second box so far good no problems....hope to be same for you...take care Christina

Debsm
Member

Re: Tamoxifin Buddies wanted!!!

Hi everyone.

I started taking the Tamoxifen on mon. I have been putting off taking it for the last few days but have had to brave it - i know it's for the best.I hate the fact that i have to be on drugs for the next 5yrs.I'm waiting to see if i have any side effects even tho its only been 3 days!! I'm hoping to be one of the lucky ones.I thought it would be more managable taking it in the evening to have the flushes at night.Reading what Sally has written i may decide to change it around.

Love Debs x

sunflower65
Member

Re: Tamoxifin Buddies wanted!!!

Hi Deb

Must say your looking good. thanks for the reply. i have found i have had more flushes today so hopefully tonight should be better. at least tonight in bed it shouldnt be ' duvet on... duvet off. LOL

Debonair7
Member

Re: Tamoxifin Buddies wanted!!!

Hi Sally, have always been a morning girl! I get the occasional hot flush at night but nothing to trouble me really - they are easier to cope with in the day - you can stick your head out of the window LOL

sunflower65
Member

Re: Tamoxifin Buddies wanted!!!

Hi all

Just wondering if anyone has changed from taking it at night to the morning as my onc said that some ladies find it better in the morning. i have taken mine at night for past 6 weeks but the hot flushes at night are really disturbing my sleep and quiet frankly Im knackered.

Today i took it in morning to see if it makes any difference

love to hear everyones veiws

hope youre all well

Sally xx

jenhar
Member

Re: Tamoxifin Buddies wanted!!!

WoooHooo!!! Have been off Tamoxifen for 3 weeks now....And haven't had a hot flush for 10 days 😉 and I have been getting sleep..not fantastic night but alot better than I was getting for the last 3 months (although I'm still dealing with SE from Radiotherapy!!)
But now my treatment has finished and my 3 weeks are up and I have to report back DR I just know they're gonna put me back on it!!
So I'll just have to enjoy life while I can..
Hope every one has a fab weekend
Love
Jenhar
xx

scouser
Member

Re: Tamoxifin Buddies wanted!!!

oh its weird isnt it?...been on tamoxifen for four days and its like starting chemo again.....waiting for side effects.......how silly am i?......even stayed off work just in case something awful happens.....

well enough of it...i,m going into
work tomorrow and just going to
get on with it..

i,ve read as much as i can on the side effects and as there is no cure for hot flushes i,ll just buy more t,shirts.....instead of jumpers for the winter. suppose it will be cheaper..lol

sunflower65
Member

Re: Tamoxifin Buddies wanted!!!

Hi all

Well im now 4 or 5 weeks on tamox and the only se im getting is the horrible hot flushes, so much so that ive given up wearing my wig even when i go out as its like wearing a wolly hat all the time.

hope everyones fine
love sally xx

chipper
Member

Re: Tamoxifin Buddies wanted!!!

hi AM McS - I've been on Wockhardt tamoxifen for just over 2 months and I think I'm SE free - certainly nothing different has happened to me ! Lots of luck xxchipperxx

annalou24
Member

Re: Tamoxifin Buddies wanted!!!

Hi AM McS

I had APS for the first month and the next 2 have been Wockhardt. To be honest I didn't notice any difference between the 2. I have been lucky and not had many side effects (see above). I don't think it'll matter much which one you take first.

Good luck with it, let us know how you get on

Anna xx

AM_McS
Member

Re: Tamoxifin Buddies wanted!!!

Hiya guys

I'm starting tamoxifen tomorrow.... eeeek! Could I ask you lovely ladies for some advice please?

When I got back from the pharmacy with my prescription, I discovered that they gave me two brands.... one month of Wockhardt and two months of APS.

Does anyone have any thoughts/suggestions/advice as to which brand I should take first? Or should I just stop worrying and pick a box out of a hat?? 🙂

Take care everyone x

krisid
Member

Re: Tamoxifin Buddies wanted!!!

Anna i am only 2 weeks on tamoxifen ...and i left it 2 weeks after the doc give me presc i wasnt brave to start it and now i dont feel anything as a big change....legs feel heavy sometimes and i need to lift them on chair but otherwise not what i was imagine..so go for it and dont be soo scared..Anna i had little mini spots but they gone i thought is my battling hormons ...because i am 42 and chemo stop my periods...so i thouht is bec of that change...i will be glad to go in menopause and not having periods back....

scouser
Member

Re: Tamoxifin Buddies wanted!!!

annalou.....ha..definitely getting clearasil then.......x