Hi,
I would really appreciate some responses from people who have tried the various tamoxifen tablets. I researched a lot before going on to it and finally asked for nolvadex-d. Although stiff joints on waking, I have apart from that had few symptoms really and no flushes or sleepless nights. Now I am fed up after hearing that nolvadex-d is being discontinued and I will have to switch tablets. I have 1 and a half packs left and plan to visit the chemist and ask him to get the brand of my choice but which one should I ask for? Your experiences would really help
Thanks
Lily x
Hi Lily
TBH theres not really much point asking what works for others as it may not work for you… the best thing is just to try each brand and see for yourself which ones give the least side effects for you.
some people get no side effects what so ever and some may get more on one brand… its a bit like which biccie you like best or what coffee you enjoy most… some people will love supermarket own brand but others might prefer a common brand and others might have a preference for filter etc… you just have to give them a bash and see.
i was on about 4 different brands… one gave me much worse SEs than the others so was happy as long as i didnt get those ones.
hope you find ones that suit you.
Lxx
Hi.
Just read this thread. The news about Nolvadex-D is a bit of a blow. I had really SE on the generic brand but Nolvadex has been much better.
I just phoned my BCN as it was her originally who suggested I change from generic Tamoxifen to Nolvadex-D.
She advised that I go and talk to my pharmacist and ask him to get a stock in to last me until I finish my hormone therapy which will be December 2012. She says that the expiry date on the latest packs will be 2014 and several patients have pharmacists who have agreed to do this for them.
I’m ready for a new supply so I’ll speak to my pharmacist this morning and I’ll let you all know what happens.
Love to all
Jan xxx
Hi everyone
Well I’ve been to see the pharmacist and she says that she can’t order a sufficient number packs to see me through to the end of my hormone therapy. I understand and wasn’t surprised to be honest. It would be 38 packs which is rather a lot.
I don’t know where I go from here, It seems that generic tamoxifen is the only other choice and I really don’t want to go back to that and it’s SE’s. I can get enough for the next month so I’ll have to consider my options and maybe speak to the doctor about it.
I’ll post any info I get.
Jan xx
Hi
Lulu thanks for your response and which was the worst for you? With the nolvadex I just went for the one which the majority of people got on with and that worked for me. Thought I would try the same tactic and hope for the best. Once I get my 2 months of tablets I am stuck with them. Jan sorry to burst your bubble and that you are in the same boat as me. So which ones did not suit you? I was always told to go to Boots if you couldn’t get nolvadex. Does that work for anyone? Jan are you going to switch to an aromatase inhibitor at some stage?I will be so at least I do not hev too long ahead of me. That is if I can talk the onc into testing my status. He is being very stubborn about me switching over.
Lily x
Hi Lily
No apology necessary. If you hadn’t have posted the ‘Nolvadex’ news I wouldn’t have known probably until I tried to get a repeat prescription and there were none left!!!
I originally took the generic Tamoxifen which I think is made by Generics UK. The side effects were horrendous, terrific weight gain, not hot flushes but one continuous hot flush. Also depression but I don’t know whether that was the drug or the side effects which affected my mood so badly.
Anyway I changed to Nolvadex and literally within 48 hours I felt much better and have been fine ever since.
I telephoned AstraZeneca yesterday to ask if they were not making Nolvadex anymore or if the NHS had stopped using them. They are not making it so we can’t even consider buying it privately.
When I spoke to my BCN she said that letrozole was a possibilty but that is an aromatase inhibitor.
There was no plan for me to switch to this type of drug but now I might have to consider it. But who knows what the side effects of these will be.
I’m going to make an appointment to see my doctor and talk to him about it.
Good luck with your onc. Mine can be very strange at times.
Love to you
Jan xxx
Hi me again
Forgot to mention that the woman at AstraZeneca said that all the supplies of Nolvadex will have run out by 30th November!!!
Jan xx
Hi everyone
Just wanted to mention to you about the next Primary Telephone support group which beginns on Thursday 1 October from 11.30 to 12.30pm and has spaces left!
This is a telephone support group developed specifically for people who have finished their initial treatment for primary breast cancer (you may still be having hormone treatment or long term Herceptin).
If you’re interested in joining please register straight away for a place. Call the UK Peer support team on 0845 0771893.
For further information follow this link:-
breastcancercare.org.uk/serv … nEvent.161
Best wishes
Sam (BCC Facilitator)
lily
for me the worst was made by sandoz i think it came in a larger sized pack and the blister pack was dark green… i had very bad bleeding and flushes with it… felt very menopausal… i was fine with APS and cp pharamceuticals however cp were taken over by woerkhart this year and some people have found them worse but there was no change for me.
generally the main side effects i had from tamox was a general ‘drying out’ eg constipation, dry mouth, dry skin, dry scalp, itchy skin… and occassional flushes i couldnt even say if i would have gotten 1 a day… after a while i never really noticed the tbh.
Lx
Hi Ladies,
I’m really fed up that Nolvadex has been discontinued…does anyone know why?
It’s the only brand of Tamoxifen I’ve tried but I feel I’ve had minimal side effects, hot flushes, bit achey and sleepless/restlesness nights, no weight gain as such but unable to shift 7lbs I’v left over from chemo etc.
I’ve checked on line and failing my pharmacy being able to secure a considerable amount for me I’ve seen you can by 270 tablets for £127, something I may consider rather than having to change brands and go through horrendous side effects.
x
Hi all
Lily, you mention Boots and I recall you mentioning them in the past. I tried Boots to see what they had to offer and all they had were Wockhardt (sp??) which are essentially CP Pharmaceuticals. A rubbish brand for me. They did manage to order in some APS tablets which I get at my local chemist anyway.
I find APS not too bad at all. I get a lot of flushing for which I have acupuncture that helps. Aside from that, I don’t think I get too many other side effects - the aching joints when getting out of bed is an age related thing and I find that keeping very active as I do helps enormously. The more I move and exercise the better I feel.
Sorry you and others are losing Nolvadex which must be a nightmare for you.
Gill x
Hi,
thanks for your posts.Jan I have dashed to my chemist tonight who waved 4 boxes of nolvadex at me and he has hidden them away with my name on. I am going to go to my GP and get as big a prescription as I can talk him into and go get em! That should take me right up to my next appintment with the onc if all goes to plan and a bit more time to plan what I do next. I would definitely buy them privately too as long as thy were coming from somewhere reputable as taking tablets without the right drugs inside would be scarey. My onc has inisisted that I am not post menopausal until I have gone 2 years without a period. Well that is just before I see him as they had vanished with the gremlin mirena coil that I think contributed to me getting BC in the first place. My onc prescribes femara I understand although that is more expensive than some of the other AIs. Thank you for letting me know about your call to Astra as that seems to prove it is final. I bet they stuck with a cheaper one!Wonder if it is discontinued arpund the world or we could go for a nice trip to New York and stock up :)I would be very interested to keep in touch about this everyone. Lulu thanks and those side effects sound horrible. I am not getting any of them on nolvadex. Gingery sorry to hear you are disappointed too. It seems mad to me as they have colossl sales but know it will be a financial decision to stop making it. Hi Gill how are you doing, havven’t spoken for a while and hope you are over all your last worries.Thanks for your comments too.
Love
Lily x x
Hi Lily
I too had the Mirena which was a total nightmare.
My BCN mentioned Letrozole to me which I think is Femara. She said that my onc prescribed that too. I’m just really annoyed that we have to face this set back with Nolvadex. Clearly there are a large number of women who are happy with it and get less SE’s. It seems so unfair. This uncertainty is really the last thing we need. We have enough to deal with already. I’m afraid that I’ll just be given the generic Tamoxifen when Nolvadex runs out and it’ll be ‘like it or lump it’. That’s no good for me and I’m sure lots of women are in the same boat.
My husband, who’s a journalist, says that we should contact a medical correspondent on a national newspaper!! Don’t know about that one. What do you think? Would it do any good?
I found some info on the net saying that Nolvadex was dis-continued in the USA in 2006 so it looks like the New York trip is off :-(.
It seems that there is Nolvadex 20 which is the same but manufactured in a different country but that is all I could find out about it. I’ll investigate that one further but if it’s the same name I assume that it’s Astra who make it or that it’s made under licence so might go the way of all Nolvadex pretty soon.
I agree Lily that we should all keep in touch and post anything that we find out or any advice we get.
Love and smiles
Jan xxx
Just to balance things up…I have been on the Wockhardt brand since I started tamoxifen this April and have had absolutely no side effects at all.Did have a mirena coil previosly and had 4 blissfull period free years but had to have it taken out and periods are back and regular.
Think it is just an individual thing as to how you react to drugs and you won’t know what that will be till you try them.All the best.
Sandra x
Hi ladies
Sandra I was on woodchardt to begin with and felt very sick all day, changed to aps, no sick feeling , however bloating is really bad and gained 7 pounds in 6 months, saw onc on thursday and he said better a bigger person and being alive, than a thin person dead, fair comment I suppose I will have to put up with the side effects then.
Sandra do you not get any bloating then?.
The onc also said tamox is a wonder drug and it seems to be working for me xxx
Hi Libby, nope no bloating for me and am actually starting to lose weight, but am cutting out the rubbish and making a wee bit of an effort. At the mo tamoxifen doesn’t seem to be affecting me at all… yup that is great but makes you wonder if it’s working ! Ah there’s no keeping us happy,lol. I know some people sail through the menopause am just hoping that maybe I will be like that…
Sandra x
Hi everyone,
thanks again for all the new info Jan you saved me a lot of searching and boo hoo no excuse to fly in search of supplies. I was quite rattled by this at first but feel that there is actually very little I can do about it and I am trying not to get stressed about things any more (some hope!). I guess the bottom line is we take Tamoxifen for a period of time but not the whole 5 years. So taking off the time we have taken it so far and adding on the number of tablets we have left, that leaves a gap in time we may have to put up with side effects before moving to an AI. I don’t think it will be too long for me but probably longer for younger folk. Who knows we may get lucky and be ok, I hope so:) Sandra yes I have heard other people worrying that it may not be working if no side effects!I have only heard that from patients though, the onc just thinks it is marvellous if you have no problems. Libby perhaps I better start buying a size bigger clothes ready for the bulge but I was hoping I had already had it lol.
Thanks
Lily x
my first cancer was strongly er pos but i got a mirena inserted post diagnosis because of the bleeding on the sandoz brand.
the amount of progesterone is tiny and it actually has preventative effects on the uterus for women on tamoxifen…i subsequently got another BC after 3 years but had nothing to do with the mirena as its hormone negative.
more women get breast cancer who dont use the mirena than those who do so based on that you could speculate that its preventative… im not saying this is the case but speculating that it does cause cancer is just the same… the main reason you have cancer is because you are female… 1 in 9 women will get BC in their life time… way more than the amount that have coils or take hormones or drink excessively or all the other risk factors… except maybe for giving birth except giving birth is meant to prevent it too.
as for the side effect i had on tamoxifen they werent bad more like minor annoyances and yes it could be a bit of a pain in the ass but the effects of cancer would be 100 times worse than some potential side effects… i dont want you think im trivialising the side effects but in the grand scheme of things they really are the least of your worries.
Lxx
Hi everyone
Just to let you know that I’ve been to see my GP today. He has suggested Farestone in place of Nolvadex-D. Apparently it works in the same way as tamoxifen. Because it’s a change of drug he’s going to speak to my onc about it and will phone me. I’ll let you know what the outcome is. Whatever we change to we’re going to have to see how we are affected with side effects. Has anyone else got any information?
Jan
Hi jan,
please do keep us posted. I am also taking Novladax D and having trouble getting hold of them Also not really having any side effects so panicking about what to take next!!!
lisa x