supply of accord (Letrozole)

Hi there, letrozole makes people very nervous and some oncologist will insist each brand is the same but so many react to the compound it’s in, many are diary powder so if you have allergies to diary you will react.

I reacted badly so my GP prescribed Norvatis Uk Femara as he put it it’s cheaper to have you well. So talk to your GP keep a diary of any side effects, and hopefully he will be as understanding or ask you chemist to order the brand that your body can tolerate. 

Im afraid it’s a learning curve to what each individual can cope with but you have done so well had to tolerate with so much just be strong and ask for what you feel is good for you 

I really wish you the very best of health.

calador

First of all, breathe! 

Second of all, don't forget that 1,000s of patients have absolutely minimal side effects on these tablets.  The ones who post are the ones who have problems, if you are OK, you don't tend to post, so it skews the stats.  

If you haven't tried some of the other brands, it's worth giving them a go. If you are going to have side effects, it's usually quite quick to show up, that said, persistence may mean that they dissipate over a month or two.  

Finally, I think your BCN is wrong, it's not like you stop taking the drug and you go back to square one in a week or two.  My oncologist was happy for me to take a few months' break when things got too much and you do need to know what the statistics are for you. Often oncologists push patients onto the AIs and fail to let them know that the actual benefit is minimal. For example, when asked, my oncologist said that the chance of me surviving 5 years on tamoxifen was 98%, but by not taking it my statistics were 97%. Some people told me that for the extra 1% it was worth it, but for me, after I'd taken it for 2 years, I decided enough was enough.  I hadn't realised how depressed, achy and miserable I had become. 

As to working to help your son out of financial trouble is admirable, but don't do this at the expense of your own health. You didn't get him into trouble, so it's not your responsibility to get him out.  Look after yourself first, first rule of first aid.

Hope you can find something that works for you.

thank you so much mistymoley.

It is so comforting to receive common sense when there is a feeling of panic.

I will certainly try to stay on letrozole, but the facts on survival are interesting. I had five lymph node removals on the right side as they were many centimetres and each one had been infected.  My doctor has already refused to give me anything except Cipla,because he runs his own practise as a business with it's own pharmacy and Cipla is the cheapest, so I am still trying for accord first , as the BC nurse did say the drug was the same but the colourants different.  I do agree that treating yourself and putting your comfort as a priority is good for us...I love a log fire and a crumpet...and red wine...and thank you again for the support. It means a lot. Will post if I find any new information about letrozole.

Hi calador

Just wanted to clarify that those were my stats, everyone is different so you need to know what yours are.  

It's appalling that your GP is trying to keep you on the cheapest drugs.

Dear calador, I can read your worry - you sound like I was when I first went onto letrozole.  I had worked myself up that much, it was like I was going to wake up after taking the tablet like some crazed monster. I was so scared.  Thankfully, with help and advice from the ladies in this group, I took my tablet and I am still 'me' .... as such, I do have side effects however, they are manageable.  One side effect I have at the moment is 'trigger thumb' (it came in both thumbs, however, it has worn off on the one, and I hope with time it will wear off on the other).  

My new side effect is 'very achy hands' - now then, I take my tablet last thing at night and wake up in the morning with the stiff-achy hands - a few clenched fists and they come back to normal (although still trigger thumb - its locked in a straight position, funnily enough towards the evening this loosens up ever so slightly).

Going off topic.  I have a couple of suggestions.  

Firstly, for peace of mind, if you can stay taking your tablet I think this will help you.... regardless of brand, knowing you are taking the tablet can mentally help.

Secondly, I do always wonder this, 'is it a side effect' or is it the way our body 'actually is with less oestrogen' - effecting different parts of our body at different times.

Thirdly, if your doctor is prescribing a 'named brand' ie Cipla.... could he
a) prescribe Femara and tell him you will take prescription to another chemist or 
b) ask him if he won't do this, to prescribe you 'letrozole' on the prescription then...

In the meantime you telephone various chemists and ask them what brand they supply, try the larger pharmacies.
You are free to take prescription to the chemist of your choice.

One thing I was told and I believe, is that when a doctor 'writes the name of a tablet' on the prescription - the pharmacy get reimbursed 'in full' because he 'has to prescribe the particular tablet'.

Finally, instead of going without, even if you have a different brand for a month or so, you can look into all options during this time.

If you do take a different brand you can then tell your doctor, you have tried a different brand and side effects are unbearable and would like him to prescribe the brand thats suits you (again, I think they have to do this, although I am not 100% sure, so would welcome anyone else advice/comments).

A little light hearted joke....
It really is crazy the ladies on Femara behave like they belong to a secret group and have to keep there heads down and not make any false moves or eye contact, do nothing that will course anyone to notice them as they are handed over their tablets, they walk out of the drug dealers... I mean chemist, walking outside and then checking the paper bag and is it, is it, is it..... YEsssssssssss - jump for joy for another few weeks only to start the process all over again!!

Sending love and hugs xxxx  

(I've waffled on, so hope my reply makes sense) x 

Lol!WhatHappened....thats me and the hoodie up and the checking of the bag...every time!!(with the swivel-eyes ,saying “hang on a minute while I check,Joe”,sotto voce,to the delivery man!!-he is usually quite patient!!)

calador...I asked my GP to write on my prescription that the brand should be “Accord”,and,apart from a few memorable mistakes by locum Pharmacists(You Know Who You Are!),I have had this brand ever since.

I also think your GP is behaving extroadinarily by not offering you the brand you ask for !!!

 I would call that downright unethical!,and if I were you would change your GP without looking back.xxand to be honest I would like 5 minutes with him myself to tell him so.

Anyway...thats what I think xx

hi What Happened,

I did love your post. It made me smile for the first time in days..especially the "secret group" .

Unfortunately my doctor insists that they are all letrozole, but his practice's pharmacist, who was sympathetic, did manage to put" accord only "on the prescription she passed onto the local chemist. He has been pretty good about supplying Accord, but refuses to order femera unless I pay privately (over £100) a month. My oncologist had given me a prescription for Letrozole-Femera" but both the doctor and the chemist totally ignored that and the oncologist did say a lot of doctor's won't supply it because of the cost. I am worried about the time gap in getting Accord because of the macmillan nurse telling me it leaves your body after a week, but then a Tenovus nurse said "after all you can have diarrhoea and lose the drug for days and it isn't the end of the world So who do you believe?

I have tried a local Boots, but they say they have to take anything they are sent and can't specify a brand, so I am waiting now another week  as Accord Customer Services said the wholesalers should be getting another delivery soon. Where is the delivery from ..India? or is it still based in barnstaple. who knows. Meanwhile the local chemist is saying why not accept Manx instead of Accord. I said "never heard or it". He said "because it is Letrozole " I despair and wish I could get him and my doctor onto""just letrozole" because like you I now have painful hands and can't start the car unless I use two hands, and can't open a pull can...all physical things not neurotic female imagination..  How do you cost out the sort of misery the side effects have on us(Incidentally re trigger finger (which I also had post radiation)...the first finger next to your thumb is believed by the Chinese to be your stress finger.!) . Enough. I will keep trying to become part of the "secret group" of ladies, or at least keep to Accord.

Love and hugs and thank you.  As LeoLady said the letrozole problems rumble on ......but waffling helps a lot!

Thank you Marie-Francoise. Sorry I am late saying this as I have been rushing around, but it is interesting  to know how others are coping. and my best wishes also to you for good health. It was kind of you to post.

Good luck calador. Don’t take no for an answer and keep fighting. xx

I totally agree with seaspirit44 - don't take 'no' for the answer.  

Hmmmm have you phoned various branches of B**ts to ask 'which' brand they have in stock?  one of the branches might just have it.  

What I will say, is 'don't go without any form of letrozole' - if you have to have a different brand then so be it 'whilst doing this you can work on getting back to the Accord brand'.  Tell your doctor you have tried the different brands and they are not suitable and you are now requesting him to put 'Femara' or 'Accord' on your prescription.  

I wish I could remember what I was told this regards to side effects and asking for a specific brand. 

Arrgghh... you say your oncologist put Femara on your prescription, then could you make appointment to see him or phone him/secretary and explain the pain you are in and how your doctor is ignoring your symptoms and making life so hard for you.  Ask him to 'write' to your doctor requesting that your doctors prescribes 'Femara' for you. 

My fingers are getting worse at the moment, I am not sure if its because I have stopped Vitamin D supplement and also Glucosamine supplement or if its a 'passing side effect' (certainly not wanting to keep it).  I've had very high blood sugar readings, I have stopped these for a while to see if they have any impact on my readings - maybe these where keeping the joint pains away. Oww what a mine field all this is, where are those happy, carefree days - all this cr*p and the doctors make it even worse (bet they wouldn't be saying this to family!!)

xxxxx