STARTING TAMOXIFEN and managing side effects

[PaulaJane]

I have been on Letrozole but had such bad side effects I have been switched to tamoxifen which I start tomoro. I have felt all that you describe, the guilt because everyone says I look so we'll. the immobility of my arm several months after the mx which resulted in physio and finally a steroid injection for a frozen shoulder and like you a year since my mx I am incredibly lopsided and await surgery on the other side. I've had hours of counselling and I found hypnotherapy worked but finally succumbed to anti depressants. I'm pleased to say that my arm and shoulder are finally improving and I'm keeping everything crossed that the tamoxifen will be easier on my body. My advice would be to be kind to yourself. Take good care of yourself. Don't feel guilty about anything because none of us on here asked for breast cancer and take your time to heal physically and mentally. Good luck.

[lozza40]

This forum is great! Ive been on Tomoxifen for the past 4 months and have suffered with terrible indigestion and wind (although I try and blame that on the dog where possible), I have also gained a lot of weight and generally feeling rough.  However, I am also on Zolodex which is lethal and makes me feel rubbish, aching joints etc etc.... I think we need to try and fight the afects of these drugs, drag ourselves out when we can, cut down o alcohol, cigs, and eat healthily where possible.

Thanks for sharing your stories and keep fighting x

[Crystalewing1]

I've been taking the tamoxifen for 8 weeks now. My initial side effect was terrible nightmares which started the very first day I started taking it. These finally went away after about two weeks, thank goodness because they were so real and terrifying. My problem is that I've always been on a 28 day cycle and up until this week every thing was on schedule. but this month my period has showed up again after only 15 days. Last month I had a lot of pelvic pressure and it seems to be the same again just 15 days later. i thought maybe I had a UTI but last month and had it checked but it came back ok so I chalked it up to just one of those things. I'm undecided if I should just wait and see what next month brings or if I should call my doctor.

[Jjn]

Hi ,
I am new to this but after looking for some answers came across this website. I have been taking tamoxifen since January 2010, I did get hot flushes and aching joints at the beginning but nothing that affected me to much, upto a few months ago se were fine, I was taking APS. Three months ago my brand was changed to teva, the hot flushes came with avengance and the joint pain recurred, then last month I was given another brand Generics with all the above se but also including indigestion. Is it just me, or does any one else think this could be the cause. I have asked for APS brand back but apparently not marketed anymore.

[kerij]

iv been taking tamoxifen for 4 weeks now the first 3 where fine no se apart from needing to wee a lot more than usual but the past 4 days my pelvis has been aching and was so bad this morn that iv been up since 4.30 saw my doc yesterday she said its just the se of the tamoxifen.

[namar82]

Hi All
I have been taking Tamoxifen since the 7th September and so far don't seem to be suffering too badly with the SE's but since taking it, I have noticed that I have got the most awful acid indigestion. Does anybody else suffer with this and can link it to taking Tamoxifen?
Many Thanks
Natalie x

[Flicka_H]

I 'm post menopausal and I've been on tamoxifen four weeks now and have just come onto this site. What a relief to find that being confused, having aching knees and being tired is part of it. I thought it was just the hot flushes! I have been gaining weight but put that down to having a bad case of the munches! I can now forgive myself for being tired....and even being tearful (not normal for me at all) because I get over tired. Since I had both breasts off I have had no other treatment and thought that i would just have to heal! With no other side effects! Perhaps I can feel tired and confused without thinking I am being a total wimp! Thanks Daisy Do I have been having night leg cramps and will try the tonic water....perhaps a bit of gin in it help?!

[icy_k]

bwgicat
I have been on Tamoxifen since Feb 2011. The only side effects I've suffered from are the hot flushes, which have settled a little now and very achy hip joints at times. I take Cod Liver Oil every day which I hope keeps the aching joints at bay.
When I last saw my Onc in December I asked him about the weight gain & he said it hadn't been proven that it was connected to the Tamoxifen. Personally, I think it is most definitely connected!
I have gained two dress sizes, with the weight mainly going onto my middle, and I have not changed anything that I was doing before diagnosis. On fact, I'm probably more active.
A friend of my husband told him that his wife gained weight on Tamoxifen but a year after finishing she is back to her pre-diagnosis weight. Guess I'm just going to have to put up with it for another three years!
Karen

[bwgicat]

Hi Michelle
I'm 2 years and 9 months into my tamoxifen regime and was premenaupausal when I started. I'm getting all the same side effects as you plus I am now the size of a house (size 12 when I started, size 18 now). I've been told throughout the treatment that tamoxifen doesn't cause weight gain or cause joint pain - have you also been told this?

[June_BCC]

Hello Rallycar

Welcome to the forums, you've come to the right place for support as the users of this site have a wealth of experience and knowledge between them.

Whilst waiting for replies you may find it useful to contact our free helpline on 0808 800 6000, opening hours are Monday to Friday 9.00 – 5.00 and Saturday 10.00 – 2.00.

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[rallycar]

Hi my mame is claire just sarted chemo.iam on tac dont know anything about these drugs can anybody help.xx

[jeanie003]

hi
been on tamoxofen since mid june . get hot flushes but was getting them before i started so can cope with them . some aches and pains but think its just normal . but noticed today that my toenails are starting to discolour every one of them was wondering if anybody else has this problem .

[foxyferret]

Thanks Keyfeatures, that's eased my mind as has the fact that it's been better today. Will wait and see but have been scaring myself silly. Sometimes it's good to live on my own, sometimes it's not!

annew272 - Yeah!!!!! Don't know when mine will be but am be looking foward to it and dreading it at the same time.

I don't want to take this drug because of the more serious SE's , I won't list them I'm sure you're all aware and every night I hesitate before I swallow it. However if my bc was to reccur I couldn't cope with the thought that I might have prevented it.

[applestreet]

Hi
didn't like to mention the dry lady bits....too much information!!!! Got my first check up with the surgeon on tuesday.. bit apprehensive now...

[annew272]

I have been on tamoxifen for a year now and to start with the S/E did get me down but over time they have decreased and are much better now, although I still get them they are less persistnet - hot flushes, leg cramps, aching joints and very dry lady bits, The last time I saw the oncologist he said it would be an option to stop - I said I would rather not, there not that bad and I would never forgive myself if it came back.
Had my first post surgery mammogram a couple of weeks ago and just got the letter to say all is ok - Yeah!!!!!

[applestreet]

Hi
finished active treatment in May and been on Tam ever since...whole raft of se's...weight gain..flushes...night sweats... joint pain, especially hips...no fluid retention as yet, thank goodness but as I have said on another thread...I'll take anything to reduce the risk of recurrence...I am actually looking forward to cooler weather...how sad is that!!!!

[keyfeatures]

foxyferret - yeah had the abdominal pain, also bloating. Not every day though and it eased off after a while. I'm off the tamoxifen now as about to start chemo. Will start up again when regime is done. But really not to worried about taking it for five years having found the S/Es to be fairly minimal.

[foxyferret]

I've been on Tamoxifen for two weeks now. I am post menopausal and when I queried this I was told it was because they did'nt want to give me the bone thinning AI's.
I've been taking cod liver oil for years but I've definately felt more joint pain recently (mostly around my hips).
Mood swings? Yes but as I live on my own, manageable, can hold a good mood when family/friends visit, but I know that living with me would not be easy.
No hot flushes or night sweats yet but I have had lower abdominal pain. Anyone else had this? Is it a side effect or is something else going on? Don't need painkillers, it's not that bad.

[nik_nak]

I finished my chemo and radiotherapy on Thursday this week and am 2 days into Tamoxifen and have never been so paranoid about side effects in my life, just seem to be waiting around for something to happen, very unlike me. I have had hot flushes and night sweats since chemo, so am hoping I wont notice too many changes...wish me luck 🙂 x Ps. love these forums great to feel normal!

[TotallyConfuse]

Tamoxifen can increase cholesterol levels? Does anyone no if this is true as I am taking statins to lower mine, should I bother or if it does increase it and I don't could it be even higher?
I also am on Wockhalt, got 1st pk from hospital, I am never sure if things that are happening are due to Tamoxifen or not, I used to get leg cramps in the night before, they come and go, but seem to be back again, had probs with knees before and had physio, seemed to help, but have started up again, could it be due to not being at the gym for a few months, maybe getting back would help? Also before I started getting hot flushes now and again, dr said prob start of meno, so not sure if that or Tamox? Last w/e we had bbq in garden and I have about a dozen bites on my legs, but have also been getting a feeling of insects crawling on my legs and arms, even though they are now drying up?
Its hard to decide whether the Tamox is the cause or not?

[kate40club]

well keyfeatures the very same has happned to me today..I got my firt period since being on Tamoxifen so like you my awful moods were probably pmt's lol....we need to calm down ..hahaa

[keyfeatures]

Well this Tamoxifen doesn't seem too bad so far...thought it was making me feel a bit PMT-ish but got my period on the exact correct day for my cycle and now feel a lot better. So it turns out it was just ACTUAL PMT combined with my mind working overtime to put everything down to a 'side effect'. Got to laugh.

[kate40club]

Hi Im 46 been on Tamoxifen for about 3 weeks now..the hot flushes arn't as bad as I expected but Im very irritated ..I think the kids are scared to speak to me ..lol.I had a couple of days last week where I couldnt stop crying it was awful.I am still having Radiotherapy at the moment so its early days for me ..a lot goes on doesn't it when you have this awful diagnosis.Im sticking with it and hoping everything will settle down.
Take care
Kate x

[TotallyConfuse]

No need to spend a fortune! prescriptions are FREE for 5 years!

[JCJ]

They gave me three month's supply of Wockhart Tamoxifen at the hospital so I have only just been for my repeat prescription. I went fot the repeat just as I started the last pack, just in case they changed the brand at my chemist and I had side effects, (so I could swap back without waiting a whole month!) I was relieved to see that the Chemist has given me Wockhart too, so let's hope they stick to that one, as I have no probelms on it.

Occassional very mild flushes - or warmer moments and no joint pain. But I was already taking daily cod liver oil and I MIGHT be taking daily anti-inflammatories (REACT trial - they could be a placebo!) so that may be preventing the joint pain. Who knows?

My hair seems a lot drier, I'm finding I don't need to wash it so often. Tiredness still a problem, even though I am sleeping quite well at night.

[aud47]

I started tamoxifen in may2011, felt terrible for a couple of weeks, had night sweats for a couple of months, aching joints for a couple months, I now feel great all the side effects seem to have dissapeared!!!! I do take them at 6am every morning, Girls, stick with it. it does get better!!!

[Daisy_do]

Tamoxifen is given to pre and post menopausal woman. I was post menopausal when I was given it three years ago.
http://en.wikipedia.org/wiki/Tamoxifen
I started with terrible headaches, nausea, night sweats and weight gain. After three months my ankle joints, finger joints and knees were very painful and I had trouble walking. I took anti nausea tablets as and when needed - on and off for two years. I had regular blood tests to check for kidney/liver damage and also blood pressure etc., I also had terrible leg cramps at night - started drinking Tonic water for the Quinine and this has worked wonders. My mind was very confused for about 6 months but this settled and although I no longer teach I realise the stress that would have been placed on me would have brought nothing but unhappiness. I just have a part time job with little stress.
Exercise: put my ipod on and walked everywhere - this kept me flexible and strengthens the bones. I started going down and then back up the stairs as that was all I could managed - now I go miles. This has also helped with weight gain.
Headaches went after three months, nausea has all but gone and ankles are very much a thing of the past. I am three years down I still struggle with weight although I am very active. They may change me or not but I will keep it all in perspective, attend all the smears, blood tests, eye tests and any other test, thank my lucky stars I am alive to feel this pain and watch for all those little tell tell signs. Find your solution ladies, one that works for YOU and share. Much love all xx

[icy_k]

I have been on Tamoxifen since Feb 2011. The biggest problem for me has been the weight gain. Almost two stone! but it seems to be all around my middle! I do not eat any differently than pre-diagnosis and I still walk as regularly as before too.
At the beginning my joints ached terribly and for the first 4-6 weeks I felt a bitfuzzy headed but both these se's seem to have disappeared - although I started taking cod liver oil capsules and have continued since, so whether that is helping the joints I'm not sure.
The hot flashes were quite full on to begin with but they have settled now. They seem quite random these days.
I too am on Wockhart and the one month I was given Generics was a nightmare! So I knew it was the change of brand. I spoke to my Pharmacist & she said that they are all 'bulked' out differently depending on the brand, so obviously something in the Generics didn't suit me. I went back on Wockhart & things settled back very quickly.
Emotionally though, it's a bit of a joke now as I cry and get emotional over stupid stuff that would never have bothered me before. Even just normal everyday TV programmes can cause the water-works! I' turning into a softie! 🙂
Karen x

[pelma]

do eny of u find the tamoxifen give u bad mood swings as my kids have said thy have noticed how up tight i get and snappy the last few weeks

[3network3]

I started Tamoxifen (pre-menopausal) a few weeks ago and the only SE's I notice are some hot flashes which don't bother me and some yellow'ish discharge down below. Told onc she said it's fine and just hormonal. i was given the APS one by the way.

[Libralady]

Ive been taking it for5 weeks approx, hot flushes overnight but they arent that bad for me, my lower limbs havent stopped hurting since i had taxotere so ive not noticed any major increase in joint pain. My oncologist prescribed my diuretics to help with my swelling feet and ankles but only been taking these a week so far.

I also use the wockhardt ones

[Patlufc]

I have been on tamoxefen since march, apart fron aches and pains and night sweats I have bad itchy legs,and patches of excema on my legs, only on my legs.Spending a fortune on creams and piriton to help.

[pelma]

i am menopause and im on tamoxifen only been on them a mouth get the hot sweets but no achs and pains but had the wockhardt and just started me the new pack and thy are aps ao let see if thy make eny diffrence

[123ali]

Hi

started Tamoxifen nearly a month ago - just a few hot flushes and yes the aching of the joints like I've run a marothon, my hair has also been coming out in handfulls.Started phsysio and hydrotherapy last week as having problems with movement in my arm following mx and snb 9 weeks ago - keep crying not sure if this is because of the Tamoxifen or because I was doing really well after the surgery, made sure I did all the exercises and going great guns until my arm seized up resulting in having to do the physio etc or finally realising what has happened and that I have a further operation next year to complete the reconstruction and the uplift and that until then I have to be lopsided. It doesn't help that friends work colleagues keep saying I look well - it makes me feel guilty for not being back at work (I work in the emergency services so woul;d be pretty useless with a arm that has no strenght in it at the moment!!) - It does help that I am not the only one experiencing the side effects - hopefully it will all settle down once the body gets used to it. Still trying to keep positive

[123ali]

Hi

started Tamoxifen nearly a month ago - just a few hot flushes and yes the aching of the joints like I've run a marothon, my hair has also been coming out in handfulls.Started phsysio and hydrotherapy last week as having problems with movement in my arm following mx and snb 9 weeks ago - keep crying not sure if this is because of the Tamoxifen or because I was doing really well after the surgery, made sure I did all the exercises and going great guns until my arm seized up resulting in having to do the physio etc or finally realising what has happened and that I have a further operation next year to complete the reconstruction and the uplift and that until then I have to be lopsided. It doesn't help that friends work colleagues keep saying I look well - it makes me feel guilty for not being back at work (I work in the emergency services so woul;d be pretty useless with a arm that has no strenght in it at the moment!!) - It does help that I am not the only one experiencing the side effects - hopefully it will all settle down once the body gets used to it. Still trying to keep positive

[JCJ]

Tamoxifen is only given to pre-menopausal women. After menopause we are switched to arimidex or similar. I have been taking Tamoxifen for 40 days now and Zoladex injections started 5 weeks ago. At first I felt very bloated as if I was retaining water - thought I'd blow up like a balloon, especially around my middle! - but this has settled down now.

Luckily, touch wood, I've had no joint aches or hot flushes. Several ladies on here have said that different brands of Tamoxifen have different side effects for them, so maybe you could ask your onc, Dr or pharmacist to change brands to see if that helps? So far, I've only used Wokhart - given by hospital pharmacy, they gave me 3 months supply! I hope when I have to go to my local chemist for replenishments, that they give me the same brand, just in case!!

If you look back through the threads on Undergoing treatment: hormone therapy, you'll find many other ladies experiencing the same side effects, if that will make you feel better!

[samlou]

Thanks Mickey24. Im sorry your sufferring too but it feels better knowing im no alone.
Sam xx

[mickey24]

Hi Sam
I started tamoxifen 4 weeks ago and have been suffering with terrrible aches and pains all over my body, no swelling just pain, and horrible night sweats! I wonder if the side effects are worse in premenopausal women? I would love to hear if anyone else has had similar side effects.

Michelle x

[samlou]

Hi everyone,
I am wondering how everyone else is getting on who have recently started tamoxifen.
I started 2 weeks ago and my whole body aches nearly as bad as tax!!! Also as well as the hot flushes every night I am retaining fluid like there's no tomorrow. I wake up in the morning and my eyes are so swollen I can barely see, my fingers are also swollen. By the end of the day it's down to my feet and ankles.
Is this normal??
Any response greatly appreciated.
Thanks Sam xx