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 .
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
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
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.
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.
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
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.
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....
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.
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.
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
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,
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.
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.
Here's also the link to further BCC literature regarding Tamoxifen.
I hope this helps, take care,