A few days off tamox and fewer hot flushes, less moody, slight weight loss (probably water but hey ho), sleeping better and feeling less tired. So hurrah for that. Might give it up to 2 weeks and hopefully by then I’ll be able to get an appointment with the onc.
How’s everyone else doing?
xxx
I was on wockhart and it took about 3 months to settle down, came close to stopping tamox as the anxiousness it caused was horrible, but eventually it settled down. I did have a few nights off it and that helped breaking the cycle of sleeplessness.
Then, after 6 month received a different brand: Generics. I only took it for 3 weeks as I turned into a complete emotional mess. Crying at anything, feeling very depressed (never been a depressed type), it was so frightening. As soon as I stopped taking them the tears stopped. One other se of generics was a very heavy period, which I only realised was a se from reading another post on here, and the fact I have not had another one in 4 months.
I am sure many of you have tried different bands, but if you haven’t it may be worth a go. Apparently even though the pills all have the same amount of the drug, the different way it is synthesised in the lab can make a big difference to the way different people react.
Generics turned me into a loony! I was crying and depressed all month and couldnt figure out why- then realised must be change in brand. Went back to usual- yes i was knackered and achey but i stopped crying like a mad woman! It reallyupset me as i felt like i was loosing my mind.
How can it be so different?!
I was diagnosed grade 3 breast cancer in Nov 2010, Had a lumpectomy 6cm tumour removed, I will be having my 3rd chemo out of 6 next tues and my 3rd injection of zoladex as we really want a family together, I am 36. I am hearing of tamox alot and am wondering if that would have any benefit for me. I am having terrible hot flushes and night/day sweats, along with the normal side effects. tired, banging headaches, and starting to put on weight Also does heard of anyone having a family naturally after chemo as i did not have my eggs stored.
Hi Luckyd,
Sorry i can’t help you with the question about pregancy after treatment but there are some threads on here that look at that subject.
With regards to tamoxifen - you don’t usually start taking it until after chemo and sometimes after Radiotherapy - it also depends on your ER/PR status. I beleive Zoladex is used during chemo to protect the ovaries - i think it is still a trial but you may want to discuss this more with your onc. I didnt start zoladex til after chemo and rads as my periods returned straight away and im 7/8 pr/er+.
I wouldn’t worry too much about the next step of treatment though, i found it best to concentrate on the here and now - there’s enough to get your head round with the chemo.
Any news from scans evie/tors?
How are you getting on SpecialK? I’m finding i’m having more hot flushes than ever. my gp said it will take a few months though for the zoladex to get out of my system and as i stopped the venlaflaxin too its meant a return of the flushes. Anyone know of any good herbal stuff for flushes?
xx
Pixie i think Red Clover is good but i fear there are links with oestrogen positive cancers so check that out.
I have my scan and mammo tomorrow. I will know if she takes a sample when she does the USS i am in big poo…
I am taking tamoxiden every 3 days and the side effects are much better. I am sleeping and i can walk. Cant believe the effect it had on my knees! So sore i hobbled. I will try to go every other day and see how that fares!
Pix i think Zolodex does take a while to shift.
Any news Tors?
i’ll look into that ta, good luck for tomorrow.
xx
Scan and Mammo all clear!!
Doesnt explain lumps and soreness but hey, who cares!!!
Phewwwww. I honestly thought my number was up again.
XXX
Luckyd, my niece had BC when she was 36 and had mx, chemo, RADs, Zoladex and Tamoxifen. Almost as soon as she had finished the Tamoxifen, she found out she was preganant and had a little boy at the age of 41. This was totally unplanned as she had 2 older children but obviously she couldn’t go on the pill as her cancer was ER. So, it’s not impossible. Really hope it all works out for you xx.
I am post menopausal, 3 years on, tried aromasin but the joint pain was bad so on tamox for the last 2.5 years, hot flushes every hour, regular night sweats and am coming off when I see my onc in 3 months.
Its quality of life that is so important to me now.
dx grade 2 hormone + 2.5cm tumour no nodes involved, rads. but no chemo.
Having said all of the above I had another cancer in june 2010, bladder cancer that was a new primary so it looks like i am a clever girl and can make more. It was early but these are more likely to recur and sometimes aggressive, chemo can only be given and help this by leaving it in the bladder within 24 hours after the op.
cystoscopies every 3 months then every 6 months then 12 months are used to try and catch the next one early.
Evie - glad to hear the all clear on mammo. Have you had it checked out for lyphoedeama?
Pix.x
Nah pixie he said there was nothing there apart from scar tissue! I think it maybe because i am exercising to try to loose some more weight and get fit. perhaps that set it off…who knows. i am being so bad with my tamoxifen but i feel wonderful and i have slept for the last week! Such a joy.
X
Hellooo Evie , Pixie
how are you girls doing 
being 3xneg i am not on tam/zol but my gyno did recommend a herbal formula for the flushes as he has other patients who had seen benefits from using, I did give it a go and found it ok, though don’t use it any longer as mine aren’t so bad and i can cope . I know BCC don’t like posting links so i will PM you if you want with the details, though i notice it does contain red clover.
rhi x
Posted on behalf of new user kaz
hi there ive been taking tamoxifen since october so about 5 months and to be honest havent noticed any side effects, ive joined a slimming world group in nov and have lost 1st 7lb i sleep fine, i dont have sweats other than when i go out and its bitter cold i go really red and warm for a while but not a horrid feeling really, so maybe its the zoladex???
i do ache a bit but just thought that was my age lol
chemo for me was really awful so i guess we all react to stuff different
kaz x
hey rhian - yeppo, PM me please - tho they are easing off a little now. Hope you are well.
Hi Kaz,
Thats exactly what i was telling my onc - they seem to take into account that chemo doesnt agree with everyone and some people have a harder time than others but just expect you to get on with it with regards to the hormone therapy - i know the side effects arent exactly life threatening, but for me they have been debilitating in many ways.
Well done with the weight loss - i reco i’ll give the slimming world a go too.
xx
Posted on behalf of new user Karen:
im a consultant for slimming world so i recomend it lol, i now have to practice what i preach lol
Hi There,
I havent posted for a while, however a few months ago i started experiencing stiff back pain and then realised the brand had changed. Back on the old brand but the stiff back is still there. i too have thought about stopping tomoxafin to see if its causing the back ache. If feel like an old lady but only 37
has anyone experienced the same?
Sukes
Hey pixie and ladies
Still off the tamoxifen, still on the zolodex. Haven’t managed to get an appointment with the onc yet, either he’s on holiday or I’m having saline fills (every 2 weeks and the pain is excriciating, but that’s for another thread!) Still incredibly fatigued, still having some bone ache but not as much, not as moody (Mr F says hoorah for that), still overweight :o). So, have decided am not going back on the tamoxifen. Like you said pixie, the side effects aren’t life threatening but they are debilitating. I just want my life back!
Love to y’all xxx
hiya all,
speacial k - have you spoken to your gp at all as you have not had chance to see the onc? what do they say? Have you seen that other thread citing the research for 5 years on tamox? Its still not convinced me - and really isnt that relevent as it was with women 51-81.
I had amy 2month review with my onc on monday to see how things had been going on my treatment break. She was impressed at how different i looked and how more my ‘old’ self i was. It was agreed for me to definitely stop the zoladex but she has encouraged me to give the tamoxifen another crack as she had felt we hadnt given it a fair go on its own before strting the zoladex and the effects from tamoxifen allone may not be as severe. She was very nice though and siad it was entirely my decision and if i felt things were starting to go wrong again that i should stop the treatment.
I still have my reservations though as i really dont want to be knocked right back down to where i was at 2 months ago. I aslo feel that i probably will be very biased and any ‘bad feelings’ i get i will automatically put them down to the tamox - even if its just a bad day!
Undecided - 6% difference over 5 years to me isnt a big enough margin to justify complete misery, obesity, and fatigue for 1825 days! But there is still that niggley little doubt of whether i should at least give it a try.
i’m back at the gym - i’ve lost 4" from my midriff area - that bit that comes out of nowhere when u hit the menopause, seemingly disappears back into nowhere, cos i havent actually lost any weight as yet!
I no longer sleep 24/7, have applied for a new job with more hours, applying to do some community arts voluntary work over the summer and booked a couple of festivals! Stuff i would never have had the energy or confidence to do 2 months ago.
so is it worth it…???..hmmmmm…not sure…
Take care all
xx
I have been on Tamoxifen for what will be 4 years in July.
I had a chat with my GP last night, telling him I hate taking Tamox. He thought if I have a chat with my specialist when I go to see him in August, they may let me come off the drug altogether.
When I first started taking it in 2007 for the best part of a year I was so poorly, I could have crawled into a corner and stayed there.
The symptoms did ease, but I have undergone two surgical investigations because of intermittent bleeding, other surgical investigations because of blood in my urine and each time I am told it is a side effect of Tamoxifen.
I am constantly lethargic, hot sweats, swollen stomach…
I am determined enough is enough. I really cannot take much more, so, watch this space…as they say…
It’s been interesting reading other peoples views on this drug.
Linda