only 2 weeks into tamoxifen and feel awful , i have nausea , extreme tiredness and headaches , today i am so fed up with all of this , i know im lucky , im just fed up ,the last couple of days its been a struggle to get out of bed ,my diet is awful as i have little energy to cook and i know im not doing myself any favours , feel so bloody miserable i just want to cry , start my rads thursday and whilst i want that part to start im scared ! a natural born worrier i m panicking over how im going to cope with buses and trains if i still feel like this , forgive me for being miserable but i just want to be who i was before , i dont want to have this terrible pmt for much longer , i`m finding it really hard to deal with so any tips would be so welcolmed xxx
Trish, so sorry to hear you’re having a bad time, but I have a suggestion that might help. For your next box, ask the pharmacist what brand they use, and try one that’s different from the one you’re on. Some people respond really badly to one brand and are fine on another. There isn’t one single brand that works for everyone, some are fine with Wockhardt, others prefer APS, others prefer generics. Worth a try…
HI.I did find the side effects got better.The first few weeks i remember being bad. Now over a year on i am afraid i still struggle with tamoxifen and i dont take it everyday as i cant function with my 3 and 4 yr old. My knees really ache and the fatigue is the worst but i have found running to be very helpful.
Give it time and the nausea should pass. I also dont feel like i have permanent pmt either now so some of my initial side effects have definaty gone.
Good luck with rads. Unfortuantly it is quite tiring so try to get as much help as possible.
Oooo, meant to say different brands gave me different SE- myabe try another type??
X
Hello Trish,
SOOO sorry to read your post. Because of side effects I’ve refused tamoxifen - I’d rather enjoy (a shorter?) life while I can, rather than have a longer wretched one trying to cope with hateful side effects.Isn’t it a possibility for you to do the same?
I start rads on Wed, saw my GP this morning who told me NOT to go home without making another appointment to see him in 6-8 weeks. His snotty receptionist refused to make one - said “the diary’s not up on my computer screen yet”,didn’t even offer to make a note that I needed one & generally was MOST unsympathetic. Not the first time this Queen of the Screen has been uncooperative about making appointments - don’t they realise how fragile this BC makes us?
I went home in tears & forgot the pills & cream I’d been prescribred so will have to face her again tomorrow.
Thinking about you & sending you hugs!
Jen
Jen, that’s rotten. Been on the receiving end of that sort of treatment from my GP’s sec too when I was having chemo. I broke down in front of her and to her credit she was very apologetic and helpful after that. I think, as you say, they just forget how fragile we can be.
Trish, I’m hating Tamoxifen too. Rollercoaster moods, aches and pains, hot flushes, fatigue and what was the other one?.. Oh yes, memory loss. I just keep telling myself that it must be working and it’s protecting me.
Lilac x
Hi Trish,
Any chance that the hospital could fix up some transport to help you get to/from your appointments? It sounds like a horrible journey if it involves buses and trains!
I live 80 miles away from the hospital where I had rads and transport was arranged to get me to my appointments.
I’m sorry you are having so many problems with Tamoxifen - my first few weeks were horrible but things have improved greatly now that I’ve switched to Wockhardt so it’s worth asking about changing brand.
Nymeria x
Hi there
Another tamox hater here too!
Been on it year and two months, and it is a pain in the neck!
I suffer with mood swings and tiredness mainly, but am free of nausea and flushes for now.
I do not take it every day, as i have two young chidlren to deal with ,as well as training as a CAB assessor and voluntary work…i need to be able to function and REMEMBER things!
I do hope things settle for you, and remember, it does have a very good reputation for keeing the nasties at bay.
xxx
ladies you truly are an amazing bunch who deserve every happiness in life , thank you all for your advice , i dont know what brand i am on ? if this carries on then i shall stop them and take my chances , my peri menopause was occurring when the cancer diagnosed so sone amounts of oestrogen were being depleted naturally , am thinking if it continues then a healthy diet may help me in long run - cutting out dairy etc ,ill wait and see for another 6 weeks , if i change the brand and it doesnt ease the symptoms then i shall make my decision ,i dont know about hospital transport other than i was told could mean lots of waiting , is thurs at the hospital time to mention it ?xxxx
Arimidex/anastrozole is a b*****d too. Anything that messes around with your hormone levels will have nasty side effects,whateever the drug or brand.
Jen3, have you ever seen Little Britain? That woman sounds like the David Walliams character that says “the computer says no” all the time. Next time you have to deal with her, get that little mental picture in your head and I promise you won’t be able to take any stupid comments and attitudes seriously.
2 days down, 1823 to go…
Off to bed now, so thanks for reminding me to take it!
Trish, not everyone makes the decision to take tamoxifen or stay on it. I’ve read that 37% of people stop taking tamoxifen because of bad se’s.
My Homoeopath suggested that BC is a wake up call to look at all aspects of our lives-what we eat,exercise, stress levels, etc etc and make changes to give out immune system a boost and recover.
I for one don’t have faith in the drugs that we are given and have choosen a different holistic approach to recovering from BC.
If you would like to PM me please do
Best wishes
Re transport
I was asked about transport when I went to my planning appointment because they knew how far away I lived from the hospital. There is a local charity here that offers a subsidised transport service that I was able to take advantage of and it might be worth asking if something like that is available. Otherwise maybe a hospital car could be arranged? There was a fair amount of waiting around from using the service but that was a minor consideration when it saved me from having to get to the hospital on my own.
I would definitely ask and tell them how hard it is proving to get there.
Nymeria x
i am lucky enough to be well enough to drive, but parking round the hospital is so bad that sometimes I take the bus. Today I was given my first appointmen, along with parking permit for special oncology bays in the multistory carpark. That is going to make life so much easier. its only a 15 minute drive but nearly an hour on the bus
This is my first post. I hate Tamoxifen for: I have endured your side effects… hot flashes, night sweats, crying jags. I’ve done that believing you were doing your job and I was doing mine; taking you and putting up with that stuff. Here’s my complaint. I had my 6 month follow up mammo. Something that was there and very tiny is there now and not tiny. Enough to be concerned about and have a stereo biopsy next week. I really believed that if I was faithfull to you; taking you everyday; you wouldn’t allow any cancer to grow. I am completely bummed out. I really do not like you Tamoxifen! Do your damn job!
Hi Tam,fingers crossed that your suspicious area turns out to be nothing sinister .I know a couple of ladies who had similar scares and had biopsies etc but it turned out not to be a re-occurrence despite being very very scary .Tamoxifen is no guarantee ,my surgeon told me that they don’t as yet know who Tamoxifen helps and who it doesn’t there may be genetic aspects involved ,there is research going on regarding this .It could well be that a lot of us are putting up with miserable side effects with no gain ,but as the medics don’t know who .Good luck let us know how you get on .