Hi Lisa
One of the drugs suggested to me by my BCN was Letrozole but I see there’s a post on here saying that it’s become very difficult to get!!! What’s happening to these drugs. We obviously need them or they wouldn’t be prescribed so why can’t we get them!!!
No call from my GP yet but I’ll let you know what he says.
In the meantime don’t panic because there’s no point.
Jan xx
Hi
struggling to understand the switch to letrozole as that is an aromatase inhibitor and in the other camp from tamoxifen and nolvadex? The switch is a big decision in our area, when you move from Tamoxifen.Do you think it is because of your age, menopausal status perhaps?
Good luck with whatever happens next with your tablets
Lily
I managed to get Nolvadex again this week, but not from my usual pharmacist and I tried 3 others before getting it, so I fear this may be my last month with it. Like you, Lisa, I’m a bit apprehensive about going back to the SEs of the generics.
Eliza xx
Hi Lily
I was originally offered Tamoxifen or Arimidex, either was OK for me, and I opted for Tamox. At my last appointment my onc asked me if I was happy with Tamox and I said yes because I’ve been so well on Nolvadex.
When I spoke to my BCN about Nolvadex being no longer available she said that the other one which seems to have fewer side effects which they prescribe is Letrozole. At that time I’d never heard of it so I came home and looked on here and the ‘net’ and discovered that it is a aromatase inhibitor. That’s why I decided to go and see my GP, who is brilliant and very supportive,to ask his opinion.
Jan xxx
Hi All
Just to let you know that my GP telephoned this morning to say he has spoken to the onc and they are giving me Letrozole in place of Nolvadex. I feel a bit apprehensive about it but I’ll see how I go. I need to be positive.
Hope you’re all getting sorted.
Hugs and smiles.
Jan xxxx
Jan,
thinks for letting us know and good luck with the change. My surgeon said the AIs are likely to cause me a lot more aches then Tam but all these views are generalising and lots of people seem fine on them so worth going into it positively
Lily
Thanks Lily
I do hope you get sorted soon. I hate the uncertainty of Nolvadex being available. I go away next week and I’m hoping that, when I collect my prescription next week, I’ve still got Nolvadex. I don’t really want to start anything new until I get back.
Jan xx
Hi,
if I remember to phone at the small slot when you can get an appointment with the Doc, I will see how I get on tomorrow. I always get 2 months worth at a time as refused to go every month right from the start but I understand 2 months is the max they can give you. I just hope my local chemist has hidden my boxes away as he promised. I may cry if they are gone. No idea what brand to ask for when they are gone. So many worries
Lily x
hi Lily
I know what you mean. My fear was that I would go to the pharmacy to collect my prescription and the generic tamox would be in the bag instead of Nolvadex.
If it’s any help my doctor phoned with more information yesterday, he really is brilliant. He says that letrozole is given to postmenopausal women who can’t tolerate Tamox. So if you haven’t gone through the menopause they probably wouldn’t prescribe it.
I hope you get an appointment with your doc. You’ll feel better when you know the options and can make a decision.
I really hope that we all find something that we are OK on. This awful disease is bad enough without any added anxiety.
Love to you
Jan xx
Hi Everyone
I collected my prescription this morning and in the bag was Femara (Letrozole). I was a little surprised because elsewhere on the forum people have been saying that it’s difficult to get. Anyway I’ve got my first month which I’ll be starting at the end of October when the Nolvadex run out.
So far so good. I’ll let you know how I get on with them.
Jan
Hi,
went to the doc and very surprised that he agreed to prescribe 3 months worth of nolvadex in one go, usually only get 60 tablets. Next stop the chemist to see if he still has the stash of tablets hidden for me. Will be interested to know how you find Femara I think I am heading that way too next. I guess your Onc thinks that is the best one too. I gather it is the most expensive of the Ais. Hope it is worth it!!
Good luck
Lily x
When I heard that Novadex D was coming off the market I went to my GP and told her I was not happy about this. I asked if I could have a year’s supply (normally I only get two month’s supply)as I only have a year to go before going on Femara (or equivalent when the time comes). Much to my surprise she ageed to me having a year’s supply. Had I not got them this way, I would have asked my chemist if he was prepared to stock up.
Good luck.
Jeannie
Hi Ladies,
just got back from the doc’s and they’ve ordered me in a years supply of Nolvadex d (hope they can get it) they’ll only give it to me bi monthly though as ‘thems the rules’ but good news at least I won’t have to worry for another year 
Also said I needed another flu jab this year as still in the vunerable group (finished chemo end Feb 09) and I’ve also asked for counsiling as I feel I need to constantly relive the diagnosis and treatment, for instance I was caught on video camera last xmas bald (by accident as I refused to let anyone near me with a camera) and it made me sob when I saw it but had to watch the clip over and over. Has anyone else felt this way as sometimes I feel as though I’m being a bit of an attention seeker.
Hope you all have some luck in the Tamoxifen stakes
x
Hi,
very glad to report that I came home with 3 months supply of Nolvadex today and he has one more waiting for me. He is trying to place another order to see if any more come in. That will take me up to when I see the onc again and maybe the menopausal tasts will mean a change of treatment. If not I will be back on the trail of tablets. Glad you all managed to get some.
Gingery I do understand what you mean. I managed to break this on holiday when we met a young couple on their honeymoon. One day I thought oh I haven’t told them about Bc and then it occurred to me, why on earth would they need or want to know. It was a shock that i had now attached this label to myself - hello I’m Lily and I have breast cancer!! Made myself sound like I was at an AA meeting! That was a bit of a turning point and trying to throw away my label and be Lily without the label. Doesn’t always work though.
Lots of luck to you all and hope you continue to stay well
Lily x
Hi gingery
That’s good news about your Nolvadex.
I understand what you are saying about reliving the experience over and over. I think that counselling is the right decision. I think that everything goes round in your mind until you just can’t seem to get out of it and move on.
I had counselling a few years ago for something else and it helped enormously.
I really hope that it helps you.
I was so sorry to hear how upset you were at seeing the video. Although I didn’t have chemo I can imagine how distressing losing your hair can be.
You’re not attention seeking, you’ve just had the most traumatic experience of your life and you are trying to deal with it and come to terms with what’s happened.
You have to be very kind to yourself. Have a few treats and be proud at what you have coped with and come through.
You are a very special person.
Love and hugs
Jan xxx
I have been on Tamoxifen since June and was first on CP then switched over after 1 month to Wockhard. I have had an up and down time but it did settle down and although my ankles ache and go stiff I really think I am making progress.
Does anyone have an emotional time at least once a month - I dont know if its hormones but the last two months have seen me with at least 3 days each in tears and very unhappy.Cant say why but just really miserable. Is this normal without the Tam or is it the Tam?
I am beginning to lose weight and applying for jobs but I do worry about the ankles and I go for first follow up scan December after 6 months. I am also keeping a diary to see if there is any relevance in any of it? Tiredness comes and goes still but my head is clearer now. Its just the crying once a month and if I had a reason for it I wouldnt mind so much but to not know why is annoying.
Anyone understand what I mean?
Interesting thread though girls. Many thanks for info.
Dx
Hi Daisy do
I understand exactly what you mean.
I was dx in September 07 and it’s only over the last few weeks, literally, that I’ve not had weepy times. I had days when I could sit and cry for England.
It’s very easy to trivalise what has happened to us. I think that we so much want things to be back to how they were again.
From what I’ve read on this forum I think that Tamox can cause low moods but I’m still on it and I’m OK now so it could just be that you are dealing with the whole experience, and I think that takes time.
I haven’t had any joint problems with Tamox but loads of ladies say they have. Someone else on here can probably help with that one.
Look after yourself. Don’t try to do too much all at once, just take it a step at a time and you will feel better I promise.
Love Jan xx
Thanks Jan - You have given me a hope that it may just be the whole experience and I recovered too quickly in the beginning with the body but the spirit got left behind somewhere.
I was thinking that in time it may all lesson like childbirth! ha
Thanks for the support.
Dx
Hi all
I hope you are all either stocked up with Nolvadex-D or getting sorted out as to which medication you will be changing to.
Just to let you know that I started my Letrozole last Saturday. I felt sick for the first couple of mornings and then that went away.
I’m stiff and achy and I feel very tired. If I sit down I go to sleep!!! If I keep on the ‘go’ I’m not as bad so I’m keeping active. Apparently swimming is supposed to be good for the achy points so I’m going to give that a try today.
The information leaflet with the tabs says that side effects should wear off in a few days. I’m hoping so.
Daisy-do - I hope you are being kind to yourself. I had a wobble a couple of weeks ago and indulged myself by buying some very expensive face cream. It’s lovely, my skin’s great and I feel good again. Give yourself a treat, you deserve it.
Love and hugs to all
Jan xxx