Hi all. Hope things are bearable for you all.That sounds promising Sal for you just hope you feel as good for the two weeks you are staying off Tam.If it works for you we might follow your example and change tablets. Just hope there are no se with the Nolvadex and if so hope there not so bad because you seem to be quite bad on the Tam.
Leadie you are brave to try and do without conventional medicines and wish you best of luck for the future.Joyce
Hi Sandra
thanks for your note! Apparently, with pre menopausal women, some womens periods stop and some get heavier, so I am assuming that I am in the latter of these! And here was me hoping that I could set fire to all my tampax!!!
Heidi xxxx
Hi all well what can I say I have had the worst day in a long long time in floods of tears in work must have broke down at least half a dozen times I am now at breaking point and really cant take much more I dont recognise myself any more …dear god I wont last another 3.5 years of this I will be a cell mate of Susan Boyle ,which is probably worse than taking the bloody Tamoxifen to be fair !!! so evry cloud eh …
maz 
Hi Maz
Sorry to hear that you have had a dreadful day, sending hugs. What happened or were you just feeling c**p generally?
Take care and here’s hoping tomorrow will be better.
Alicex
Hi Maz
((((hugs)))) It’s horrible feeling like that isn’t it? Especially at work. I had a day like that a couple of months ago and I felt so pathetic, which made me cry even more… I understand completely what you’re going through and you have my sympathy. If you’re feeling so bad, you really should see your GP. Feel free to pm me if you want to.
I have to say that my mood has improved markedly after missing just 4 doses of tamoxifen. I’ve even made elderflower cordial today. Last week I wouldn’t have done that - I was just too lethargic to do anything. I’m still feeling tired, but I’m in the middle of rads, so that’s a factor too I think.
Leadie, I can see me coming off the tamoxifen permanently if the Nolvadex still gives me SEs. I’m a very active person and not prepared to spend the next 5 years living a very different life to the one I’m used to.
Hope you’re all coping and Maz, here’s to a better day tomorrow.
Sal x
Hi to you all and hope we dont get as down as Maz.It is terrble to be that way and hope by us all keeping in touch it will help you to know your not on your own.Hope tomorrow is better for you and will be keeping my fingers crossed that you feel less weepy.
Sal you seem to be doing really well off the Tamoxifen lets hope it continues for you!Its good to see you so positive.Good on you.
Take care all .Joyce
Hi all thanx for all your kind words …Today was a bit of an improvemnt on yesterday but only just …I am really trying to pull myself out of my black hole …will let you know how I get on !! hope you are all ok and not fed up of my moaning !!!
maz
Maz, tie a rope round your waist, we’re all here at the edge of the black hole and pulling like mad. Don’t try to do this alone. I think if I felt as bad as you, I’d give it up. I’d be more worried about my mental health than the unquantifiable risk of a recurrance of bc. But that’s my view and you must make up your own mind. I would however, talk to the onc about how you’re feeling.
I feel like myself today for the first time in about 6 weeks. What a relief. I’ve been trying to do some research on alternatives to tamoxifen, but really there is nothing. But I’ve read some interesting points of view along the way.
HI SAL
I am really struggling with tamox too, feel like im going mad, also eye probs weight gain, no energy. My bc nurse told me to have a 2 week break, dont no what to do, all I no is that I cant keep this up.x
Hi Sal were all behind you,would you consider asking onc to come off the Tam.for a while because it seems to be working for Maz and its always worth the try if its going to make you feel better in yourself.I was thinking of it myself because of my severe headaches making me like a person possessed and falling out with everyone,but thankfully these seem to have started to improve a bit so will wait to see if just a temp.reprieve.
Hope you had another good day Maz looking forward to hearing how you have done.
Take care all.Joyce.xx
Sorry got my names mixed up.Sal hope you had another good day,and Maz maybe you should consider asking you onc to take you off Tam.as it seems to be working for Sal.Surely its worth a try.Joycexx
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Hi all,
I’ve been following you all for the last week or so and have been united with you all in your struggles. I’ve been trying to get hold of my bcn since monday without success so that I can discuss my se’s. But, what I can’t understand is that I’ve taken tamoxifen since mid-february and like the rest of you I’ve experienced what I think is the worst of the se’s which is the ‘black hole syndrome’ and now for no apparanent reason and for no changes in anything on my part I have since last thursday felt loads better, I hope this is a permanent change but would really like to know why things have changed. I’m hoping that I’ve turned a corner, but only time will tell.
If this is a permanent change I hope that it gives abit of a positive outlook for some of you as I know that I am a little bit further on in this journey than some of you are.
I’m with you all whether its good days or bad. Regards Olwen
Does anyone have bloating with tamox ? the past few weeks I have noticed this plus a bit of ankle swelling. x
Hi Libby, I’ve been taking aqua-ban, it’s not helped with the bloating but has helped alot with the swollen ankles. I asked the bcn if it was Ok to take it and it is. I find that my stomach gets more bloated as the day goes on and I’m getting quite embarrassed about it, I’m sure if I were to make alterations to my diet that it would help but I haven’t done anything about that yet.
Take care Olwen
Hi all …not a bad day today …until a friend told me today she is going for the dreaded breast cancer tests treating her as urgent …dear god is there no end to this bloody disease …I was trying to reassure her that it is prob nothing but when she described how she felt my stomach lurched …it was very familiar …just hope that I am wrong…I was just getting to the stage where I didnt think about BC every second of everyday …but now its back in my head again …anyhow thanx for all your support …I am going to carry on with the Tamoxifen until my hosp appointment in July so just pre warning you the mentalist will still be posting !!!
I Cannot tell you how much it helps being able to chat to you all
xxxxxxxxxxx Laters …xxxxxxxxx
the mazx
Oh my word, why didnt I come on here earlier??? Diagnosed over 5 years ago, had lumpectomy then mastectomy within 3 weeks of each other, chemo & been on tamoxifen for almost 5 years.
I have mentioned the side effects, discussed my mental health, been to ENT specialist for migraines, dizzy spells, fatigue & am now off sick with another attack & waiting for CT scan of my brain. Even yesterday my GP said ‘well yes, this might all be linked to the tamoxifen…’ - OMG he wants to have a look on here!!!
The mood swings, the wanting to kill somebody & maybe myself, the severe pain in back, knees, wrists etc, headaches that last for days & days, just wanting to sleep all the time & feeling everything is an effort. Then theres the waking up in a pool of sweat & feeling like you’ve not slept for a year and so the list goes on.
I have genuinely thought that I was going mad, especially yesterday when the GP referred me for CT scan, just to rule out secondaries… now Ive read some of these comments, Im confident a lot of the SE I am suffering are from this wonderdrug!!!
THANK YOU, to all of you for taking the time to speak on here - you have lifted me so much. Now Ive just got to work out how to sort my armpit, shoulder, chest pain out - do other women have to religiously do exercises every few hours to avoid the pain & do other ladies still have loss of sensation in armpit???
Chins up to everyone on here, and thank you again.
XXX
Hi Geordie lass …glad we can be of help …I too as you prob read have been ready to kill its like something has taken over me …but it is good to know that I am not alone …I am omly 18 mths paost matectomy and recent ld recon I have never regained sensation in my armpit and have constamt pins and nedles in my arms that could well be a heart attack or Tamoxifen who knows…past caring lol 
maz xxxxx
Maz, I’m really pleased that you’re feeling better.
Geordielass, how have you coped with feeling like that for so long? I’d only been taking tamoxifen for about 11 weeks and I’d had enough! I’m amazed (no, horrified) that no one thought about tamoxifen as the cause of your problems before now. I really hope you can get sorted quickly. Keep posting on here and let us know how you get on.
I only had surgery last February, but my armpit is still numb, as is the back of my upper arm. My shoulder is cr*p too, but that’s mainly because I broke it and did lots of other damage in a skiing accident 3 years ago!
I now seem to have pain in my ribs, is this the tamoxifen as well, as I have not started rads yet. x
Hi Maz thats great you feel a bit better but must be awful for you to be told your friend might have it after what you have been through yourself.Just keep your fingers crossed for her and hope its not it’s not the “demon”.Like yourself I find no matter where you look books or newspaper or even the television,its been mentioned and we are all trying to put it to the back of our minds,with no luck!Hope its a good result or she might be joining us on these postings.Take care all.Joycexx