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Tamoxifen

25 REPLIES 25
Arl
Member

Re: Tamoxifen

Hi Kary,
I hope you get started with the radiotherapy when you go back Thursday, as for the flushes they are a nightmare, I was cracking up with them, don't think I bothered with any make up at the beginning, but mines affected everywhere else it was awful, I
Mind having to change pjs twice in the night, and being on a bus everyone wrapped up, me T shirt on, I wish I could mind how long they lasted but was on megastol for couple of years, decided to come of them but at the time would get an odd flush, probably try with the ones you are on just now but if you get lots of side affects try changing the brand and stick with the same one, I had to change chemists because one wasn't even trying to get me the ones I was on, took me into a room and tried to give me a lecture that they are all the same, but I had my answer ready they are not some got different ingredients and coatings, they did not like being told, but it's you that's on them, not them, I wasn't very popular in that chemist afterwards lol!! Just change ones if you have to. x
Kary
Member

Re: Tamoxifen

Hi Arl iv been to hospital today I still am swollen the nurses were concerned but the consultant didn't seem to think there would be a problem so yes I go Thursday,got to say it's the first time iv had make up on in a little while,hell it was sliding off my face will need to re think this when I get back to work,flush flush ,flush cheers tamoxifen,i do hope it settles and thanks for the reassurance that it does .

Arl
Member

Re: Tamoxifen

Sorry to hear Kary that you have got an infection, I think they could possibly hold back on the radiotherapy until it clears up, poor you, I found when getting the radiotherapy was not as bad as the chemo, obviously side effects to this too, just be prepared for the tiredness, but you'll get through it. I hope the tamoxifen does eventually die down with the affects your having just now, I can't mind how long it took to ease a bit with me, I do have a bit joint pain in legs but normally once I've completed a days work, climbing the stairs is the worse. Every opportunity I get I do have to rest, but I did mind at the very beginning is this going to get any better. I know loads of woman are really suffering on these, I hated them to begin with, but I'm sure in time your body will get used to them, let us know how you get on when your back at the hospital, take care.x
Kary
Member

Re: Tamoxifen

Yes Around I'm around 3 weeks in with the tomoxifen I hate it!I was taken off hrt in June when I found   out about BC ,then they removed my morena coil,had op on tamoxifen,that order I was struggling with hrt withdrawal when they started me I don't flush now I combust,i can't even eat a hot meal without it starting,im dreading eating out or anything spicy,and sleep has gone,they are trying me on sleep stuff ATM but they don't seem to work,i think that's the only side effects,it gives me great comfort to know that it will settle down.I found out on Tuesday I do actually have an infection in my breasts I think that explains the weeping on monday,very hot and swollen,will find out on Monday if it will effect my rads planning appointment for Thursday ,I think it will but we will see.Thank you for all your advice I will mention to the oncologist if I see her on Thursday ,but I'm hoping it settles down before iv to go back to work,i don't think I could cope with the heat,enjoy your weekend ladies x

Arl
Member

Re: Tamoxifen

Hi Kary,
Have you just started with tamoxifen? They do take a while to get used to, I'm always tired, don't have any problems sleeping, if you are having problems maybe you should have a word with your doctor especially if you are teery, some people can make them like this or feel depressed, I've heard of few woman having to get an anti depressant which works for some but maybe not everyone, your body takes a while to get used to the, remember though all the treatment you've had has had a part of the way we feel too. I really was cracking up at the beginning and thought of even if could reduce the tablet, I've heard of to some people takes a 10mg in the morning then 10mg at night, I just prefer to take mines in the morning so that you know that you've had it. Hope you start to feel better soon. x
Kary
Member

Re: Tamoxifen

Well I hoping it all settles down,it the sleep thing too,i don't know how I'm ever going to go back to work if I feel like this,im having quite weepy moments ATM I'm sure it's the drug,im finding this reading very interesting and informative,thank you ladies

Arl
Member

Re: Tamoxifen

Try and persevere with taking the tamoxifen, honestly I was the exact same, I was finding it so hard to cope, not wanting to go out because you were soaking wet, they need time to start working, I got put on a megastrol tablet I think it was 1/2 in the morning and 1/2 at night, they helped a lot, I was on them for about 2 years, then decided to come of them. I got a chillow pillow from Amazon, within about 3 months I started noticing the changes, the flushes had died down a lot. I'm not saying you don't get other side affects, I'd be lying if I did, at the moment I suffer from tiredness, a little joint pain, but just sore legs when climbing stairs, as for if you suffer from constipation try movicol more kinder to your stomach, eat a bit more fruit, I have another 6 & 1/2 years on it, and honestly I wouldn't advise to stop the tamoxifen, if you can stay on it please try, you have come so far with all your other treatment.

Arl
Member

Re: Tamoxifen

I was the exact same at the very beginning, makes you not wanting to go out, they do get less or should I say they should, I was on a megastrol tablet for about 2 years but I didn't realise it was a steroid, and have put on about a stone and half, so decided to come of them, I got a chillow pillow from Amazon about £28 found this really helped a lot. Try not to read into all the side effects of tamoxifen, just experiment with all the brands and try stick with the same one that suits you. I've been on the tamoxifen just over 3 & 1/2 years, still got few side affects but the flushes should get less in time.

Jobey68
Member

Re: Tamoxifen

Ladies ive taken Venlafaxine from the off with Tamoxifen and barely have any side effects, if I miss taking it the flushes come on pretty quick so I know its working for me! Xx

Charys
Community Champion

Re: Tamoxifen

It's a real delight isn't it, for some unlucky people. I'm on a break from them right now, day 9 without tamoxifen.  Do you know the odd thing is I had one hot flush only through the 6 weeks, but my mental health became desperately bad and I was forced to stop. Venlafaxine is prescribed to help with flushes , and as it happens I was ready on it and have been for years, so maybe that is why no flushing. Apparently Kary, it can take many months to settle.........😨 Thanks Melanie, That is my exact plan, I have a script here for 10 mg dose and I intend asking for teva. I've taken TEVA Venlafaxine for a decade and it is the only one that doesnt give me indigestion. 

Kary
Member

Re: Tamoxifen

I'm a week and a half in and ready to throw the sodding tablets out the window,no sleep at all,sweating ,well actually combusting had a glass of wine last night and it made it worse,i was hoping things may settle down,not looking likely is it....

Melanie8
Member

Re: Tamoxifen

Hi Charys
I have been taking tamoxifen since April. I am finding the side effects of sweats quite debilitating. My head and hair and wet most of the time. After any slight excercise or exertion I am bright red. My joints ache, cramps and I get tired so quickly. I haven't had ibs - although I had that before. I get itchy skin too. I have switched to Teva and found the anxiety less. X
Charys
Community Champion

Re: Tamoxifen

An old thread I am bumping up as found it really interesting. Anyone else out there struggling right now with their side effects?

I am 6 weeks in, and after querying when they might stop I was told 'in a few months or not at all'.  My two main problems are muscle fascilations ( random twitching, round all muscles, anywhere, seemingly going in rotation round my body), and gut bloating with pain and basically IBS like symptoms which are miserable. I've lucky enough to not be getting flushes apart from a few hot nights, but certainly I feel lethargic, forgetful and emotionally low. There are some assorted smaller things like aches and pains but they aren't anything I couldn't put up with.  I just mentally 'don't feel like myself' at all. I've read various threads on here, and many women seem to say that 3 months is when they noticed a change, some say up to a year. Can anyone relate to me right now as they are also suffering similar? Can anyone offer hope that IBS can resolve as the body adjusts ? 

 

Ive read lots of accounts of people who have stopped it, as their life quality was affected so significantly, but I so want to give this a good chance to do its job. 

 

TIA x

kbmd
Member

Re: Tamoxifen

Thanks for the info, ladies... so very helpful and encouraging.  My 2 cents...

I was 1 year on Tamoxifen in early July.  The first few months I had almost no side effects.  Later, my periods became almost intolerable -- then gradually stabilized.  I may have had other SE but wasn't really paying attention then.  I was skin and bones, had lost job, legal battle, needle phobia, traumatic surgery experience - my Naturopath thinks this may be why I felt no SE at first... my body was so stressed it couldn't deal with anything else. 

 

A couple months after surgery, I began paying more attention to how I felt.  Was very helpful to find this discussion board and read other women's experiences.  The joint pain was getting so bad and I couldn't figure out how at 45 I could have arthritis so bad.  Ding a ling -- it was likely the Tamoxifen.  I had been taking the Mylan brand late last year but after moving, the new pharmacy gave me Teva.  Recently, my current pharmacy told me they couldn't get Teva anymore and switched me to Mylan.  It makes me $%^&* angry that pharmacies (and drug companies) can switch brands on you and tell you they are the same.  When my SE change or get worse, they say I'm crazy because there is no difference in brand.  Rubbish!! (I agree that different brands affect different women differently so gave up thinking there was a "right" one for all)

 

I spent the last few months thinking about it and made the decision to quit Tamoxifen.  From what I've read, they say 2 years is the minimum time to take it with the most benefit so I really tried to weigh the choice.  I was told to take it for 10 years.  I've been off less than 2 weeks and I too feel a whole lot better already.  Quality of life is important --- I just didn't realize how this drug was affecting mine.  I had worries about the consequences but recently met with a "life coach" to help with some of the trauma (job, C, etc) and as I get back in touch w/myself I feel more confident in my choice.  At the moment, I'm still too traumatized to see any doctors (can't even get BP taken without panicking) so I read as much as I can and work with the life coach to learn to trust my own intuition and what is best for me. 

   

I know quitting Tamoxifen isn't for everyone but it's comforting to know some of you came to the same conclusion and I'm not the 'crazy lady' who ignores doctors orders. 

 

 

suebeehoney
Member

Re: Tamoxifen

Hi All,
Good to know we're not alone. Great forum of information. I was to start tamoxifen in June but started it mid Jul and lasted 4 days. I have stopped. Besides profusely sweating I had stomache pain that scared me and constipation. The more research I do the more I don't want to take it.
Sue
loona44
Member

Re: Tamoxifen

Hi ladies.

                    i was prescribed tamoxifen in 2002 and wasent really told of the side effects .i suffered fron hot fluses night sweats and fatique which was mostly because i couldent sleep through the night with the sweats . anyway i had been taking it for 2 yrs sudd enly came allergic to it came out in awful itchy rash all over my body my gp took me off them straight away and i felt so much better anyway 11 years later the cancer came back as dcis in same breast same place i asked surgeon if it was because i hadent been on tamoxifen for the full 5 yrs she said no it wouldent of made any difference it was a different type so in oct 2013 i had mx with immediate ld recon but couldent have implant because i had radiotherapy previouse and the skin had been damaged so if i had known about these things i would of done things very differently but i am a lot more informed these days with being on the forum etc. i have just come out of hospital having had fat transfer to reconstruction for the second time results looking good at the moment lets hope it stays that way .so if you having problems on the medication dont suffer in silence ladies you know how you feel . linda

             

Claudie
Member

Re: Tamoxifen

Hi Pam,

I am pleased to read you are going to take the matter forward!
Initially, my oncologist said it usually takes 3 months for most people to settle down with the main Tamoxifen side effects and sometimes it could take up to 12 months. After 11 months, I was obviously not going to be in either categories.

In some respect, I was lucky I had to go back to hospital every 3 weeks after chemo for my 18 cycles of herceptin; it gave me a chance to review with the oncology team how I was getting on and receive some advices.

I think keeping a daily log on how you are feeling is very useful to enter in any kind of discussion. Mine was colour coded and my oncologist wanted to get rid of these "red days". It also helps to make you realise that you might be experiencing more (or hopefully less) side effects than it seems.

Wishing you all the best xx
Pam64
Member

Re: Tamoxifen

Thank you ladies for your candid accounts about your struggles with Tamoxifen.  The doctor I saw on behalf of my oncologist really didnt seem to care, and gave me a slip for an appointment in 12 months, I will not continue to feel like this so will start knocking on doors until I get some resolution.

 

It seems they should be more up front about how this drug can effect some so badly

 

I wish you well with your recoveries,

 

Pam x

 

pedal999
Member

Re: Tamoxifen

Hi Pam,

I think the previous posts are good, and give you some perspective. I'm on month nine of Tamoxifen, and unfortunately the brand I have found which for me has minimal side effects, seems erratically available at the chemists.
The last packet (month 😎 gave me less hot flushes at first than my least favoured brand, but then as I came to the end of the packet, I started getting anxiety and cognitive problems.. Which I knicknamed #tamoxifog !
I'm going back to GP to see if they will prescribe the original version made "Nolvadex-D" which apparently is better for side effects, but due to cost isn't often prescribed.., or if not whether they'll try me on the oral solution "Soltamox".
I haven't named the brands that are best / worst for me, as I have read a lot in trying to sort my situation, and learnt that each of us experiences the different brands differently, so what is favoured by someone may be someone else's nemesis..
I also have been recommended to a "Chillow" (chilled pillow)- easily found by Internet searching, and it arrived today.. Already it has made me feel much more comfortable / in control of my hot flushes, currently happening about every 90 mins, so an optimistic of improved sleep tonight.

Hope this helps
Kath
Claudie
Member

Re: Tamoxifen

Hello,

I wrote this comment on another post this morning but I think it might be appropriate here too....

I would like to describe my tamoxifen journey and I think this tread is as relevant as any others.

Background info:
- diagnosed in August 2013, age 37 year old, with grade 3, ER+, Her2+ on right breast
- surgeries: lumpectomy in August 2013, mastectomy + reconstruction in October 2013
- treatment: FEC-T (6 cycles) + 18 cycles of herceptin

I started my hormonal treatment 3 weeks after the last cycle of taxol with 20mg of tamoxifen daily (March 2014). As most people have described it before, I had a lot of side effects (physical and mental) and I carried on hoping they would settle down. However after 6 weeks, I was a complete mess (very tensed, crying for no reason, not feeling sad but not enjoying life etc...) and my oncologist gave me a 3 weeks break from tamoxifen. We also discussed counselling, CBT and anti-depressants. At that point, I refused the anti-depressants as I thought if I really had a problem with my cancer diagnosis, I wanted to deal with it rather than hide the problem behind some drugs.

So I booked myself for counselling and met a fantastic person. At that point, I had been off tamoxifen for a few weeks and like someone mentioned before, it was like someone had flicked the switch and I was back to feeling normal. The first few sessions of counselling were very useful as it really looked like I was naturally using all the appropriate mechanisms to respond to the challenges of life. Half way through counselling, my oncologist suggested to restart tamoxifen by taking a lower dosage (5mg instead of 20mg - after all, 20mg is one size of medication fits all and I am only 1.60m and 50kg). Straight away, I felt the side effects coming back and I went to my last counselling session in such a mess that the counsellor booked me for a few more sessions. The counsellor experienced first hand what I had been describing and agreed that my mood swings seems chemically induced.

I kept a log of all my side effects and the mood I was in depending on the brand of tamoxifen used, the tamoxifen dosage and the time of the day I was taking it (I tried 3 different brands, cut the pillsin half and spread the intake between morning and evening, then evening only hoping the side effects will be unnoticed during my sleep). That was very useful information to show to my oncologist to discuss the mental side effects I was experiencing.

By August 2014, I was still struggling and decided to stop taking tamoxifen for our 2 weeks holiday. Once again, I felt better immediately and was able to enjoy being with my family.

In September 2014, I had a review with my oncologist and we agreed that my mood swings were chemically induced and I should try to take some antidepressants to rebalance the mental side effects induced by tamoxifen. Initially, I started on 75mg venlafaxine and still 5mg of tamoxifen daily. Within a month, the side effects of the venlafaxine had settled down and I was confortably living with 5mg of tamoxifen. My GP then suggested to increase the tamoxifen to 10mg; it was fine for a few weeks but soon I started struggling again and my GP doubled the amount of venlafaxine (150mg). Once again, it seems to do the trick and it was suggested to increase the tamoxifen to 15mg. Therefore I increased the dosage, without telling my husband, and after 10 days he asked me if I had changed something as he felt I was on the edge again... My GP suggested to increase venlafaxine again to 225mg but I refused - even if I was "coping" with life on the mixture "tamoxifen + venlafaxine", I was not really happy and increasing venlafaxine even more scared me (and my husband).

At that point, the oncologist suggested to try a different anti-depressant called citalopram and I switch from one to the other over a 4 weeks period. The switch was not nice but not as bad as it had been described to me. Unfortunately, citalopram did not work for me; it completely removed all my feelings and I was just a robot doing daily actions without positive or negative moods. So, I swapped back to venlafaxine and felt more settled.

In the mean time, my periods were steadily back (within 1 year of last chemo) and my oncolgist saw it as an alarm bell! As I was struggling with tamoxifen, it was suggested to replace it with monthly Zoladex injections and Letrazole. My husband and I were so happy when we left the hospital - NO MORE tamoxifen. However, I was going to stay on a low level of venlafaxine as I was very likely to still experience some side effects.

By February 2015 (after 11 months of struggling with tamoxifen), I started my new hormonal regimen: monthly Zoladex injections + daily Letrazole + daily 75mg of venlafaxine. For me, this new treatment is like the difference between day and night; I feel so much better and even the children said they have their mum back! But don't get me wrong, I hate the Zoladex injections; it feels like being stabbed and I cried with pain after the first one. Apparently, the slimmer you are, the more painful the injection is. Now, I take some ibuprofen before and after the injections and it is manageable.

When looking back at my 11 months on tamoxifen, I do question the point in being alive with such an horrible quality of life. I am very pleased by the support received from my oncology team and my GP; they did not give up on me and we finally found an hormonal treatment that is adequate (periods stopped straight away after the first Zoladex injection and I feel generally happy with life).

I wanted to write my story on this site as I would have loved to read a similar story when I was struggling. Too many people assume that if you are feeling down, it is because you are down and having trouble dealing with your cancer! Also, I did not want to increase my chances of the cancer coming back by stopping tamoxifen, I had reached the point where quality of life had to be more important!
Ash66
Member

Re: Tamoxifen

Hi Pam

 

I lasted 3 weeks on tamoxifen then decided there was no way I was going through that misery for the small benefit it might bring. I got my breast care nurse to tell me the actual statistics between taking it and not taking it and there was about a 9% difference. To some people that might be too much riisk but I believe quality of life is important and I'm willing to accept the risk. At the end of the day, it's all just numbers and there are no guarantees.

 

It was my surgeon who said I'd need to take it for 10 years and tried to hide a smile as he said 'if you can put up with it'. Oncologist also said 'if you really hate it let me know'. I suspect there are few people who don't suffer on it. I turned into a she devil and didn't recognise myself. I'm not prepared to put myself or my family through that.

 

I also discussed it with my own gp who agreed with me quality over quantity every time.

 

I've been summoned to the oncologist and no doubt that won't be an easy discussion but I'm happy with my decision and don't intend to change my mind.

Mindy63
Member

Re: Tamoxifen

Pam I've just re read your post and see you've been taking for 6 months. Sleeplessness was awful for me for a long time but, apart from the odd night, I seem to be sleeping better. Some symptoms do settle down after a while.

Mindy63
Member

Re: Tamoxifen

That should read recommenced not recommended!

Mindy63
Member

Re: Tamoxifen

Pam I was very reluctant to start tamoxifen but have now been taking it for 2 years. I did have a break so won't reach 2 years of taking consistently until August. Almost immediately I started to ache down my right hand side. I persevered despite fatigue flushes and aches. After taking for 6 months my left upper thigh started to ache, my eye started twitching, I had a weird pain into head, struggled sleeping and had 'shakes'. Some if these problems subsided: twitching eye/ stabbing in head and I think they may have been stress related.
My WBC has been consistently slightly low. I have no doubts that is related to tamoxifen.
After taking tamixifen for a year my neck started to ache and I got uncomfortable nerve like pain into head. The oncologist suggested a 6 week break. I gradually felt perkier and recommended tamixufen. After 10 days I got excruciating upper back pain. I stopped and started. At present I'm suffering from thigh neck and back pain and occasional fatigue. I intend giving up tamoxifen when I reach the 2 year mark. I don't know if it's tamixifen causing my problems. My worry is it's disease spread though all scans clear. It had been a real struggle psychologically but I've given it my best shot. A few days ago a woman was bag packing at tescos to raise money for breast cancer research and we got talking about Tamoxifen. She said she'd had absolutely no problems with it.
The only way to find out which camp you fall into is to try it for as long as you can. You might be one if the lucky ones.

Jo_BCC
Member

Re: Tamoxifen

Hi Pam64

 

Welcome to the BCC discussion forums where I am sure you will get lots of good, honest support from the many informed users of this site.

 

While you are waiting for replies could I suggest you give our helpline team a call and have a chat with them about the problems you are suffering, they're here to support you through this.  Calls are free 0808 800 6000

lines open weekdays 9-5 and Saturdays 10-2.

 

http://www2.breastcancercare.org.uk/publications/treatment-side-effects/tamoxifen-bcc20

 

Here's also the link to further BCC literature regarding Tamoxifen.

 

http://www.breastcancercare.org.uk/news/vita-magazine/hormone-therapy-your-questions

 

I hope this helps, take care,

Jo, Moderator

Pam64
Member

Tamoxifen

I have been struggling with Tamoxifen for 6 months now and discussed with my oncologist who said I would benefit if I can continue to take for another 18 months at least. My problem is the side effects, migraine or headache nearly every day, painful hands, cognitive dysfunction and the typical menopausal symptoms sweats, cramps, sleeplessness. Is there anyone out there who has stopped taking tamoxifen, or considered doing but decided to carry on with it and why? Thank you. Pam