75.3K members
1.2M posts
cancel
Showing results for 
Search instead for 
Did you mean: 

NICE & Aromatase Inhibitors

14 REPLIES 14
Guest user
Not applicable

Re: NICE & Aromatase Inhibitors

TEAM Trial This is another trial currently being undertaken - one group get Tamoxifen for 2.5 years followed by Exemestane for 2.5 years and the other group get Exemestane for 5 years. You need to be post menopausal to take part.

I\'m taking Exemestane for 5 years and have had no problems at all. My sister took Tamoxifen for 5 years and had huge problems so I was more than happy to take part in this trial, it\'s often the only way to get the newer drugs.

B x

Guest user
Not applicable

Re: NICE & Aromatase Inhibitors

Hi Fuchia There is a drug called Emexastane (think that\'s the correct spelling!) that my Onc would have switched me to if my joint aches and pains continued. He told me to stop taking the Arimidex for two weeks to see if the pains ceased, if they did he was going to change me to Emexastane. If anything my aches and pains were worse so I\'m back on the Arimidex. I think the other drug is more expensive than Arimidex but, heeeyyyyy, if it does you good with less side effects, it\'s worth it!

Guest user
Not applicable

Re: NICE & Aromatase Inhibitors

End to Arimidex I have been on Arimidex for over two years after being on Tamoxifen (which caused very bad side effects), and although I had never heard of it until then, I came home and looked it up on the internet. I discovered that it had only just been licenced for early stage breast cancer in the UK, after having been licenced for late stage for some time (this must have been around the time of the end of the trials in 2004). In June I will have completed my five years on hormone therapy but I cannot find anyone else who has yet reached this stage on Arimidex (I have asked on this forum). I am sure I can\'t really be the first in this country to complete this treatment? (3 years Tamoxifen, 2 years Arimidex?)
Fuchia - what are your side effects? I have had very few problems with Arimidex (nevertheless looking forward to coming off it) - and my name is Trish, too!
I feel as if I have been on the opposite of HRT for 5 years, so am hoping I will feel younger, perkier and more normal when all this has finished. But I know I have got off very lightly compared to many others on here (and my sister who died aged 45 of this beastly thing.)

Trish

Guest user
Not applicable

Re: NICE & Aromatase Inhibitors

Arimadex --I have had some side effects from Arimadex Can you tell me if there is another drug which can replace that?? I mean ,that is as good as?I am not able to have tamoxifen. Trish

Guest user
Not applicable

Re: NICE & Aromatase Inhibitors

Licensing The licence a product receives covers the whole of the UK - for Arimidex relating to early BC it currently reads...Adjuvant treatment of postmenopausal women with hormone receptor positive early invasive breast cancer. (all these details for any licenced product can be found on the \"summary of product characteristics\" - most of these are on the electronic medicines compendium. (www.emc.medicines.org.uk)

The difference is SMC, NICE, local prescribing (or restrictions on prescribing ) policies which exist around the country. Any GP, anywhere in the UK could prescribe an aromatase inhibitor if they felt clininally able to do so - financial pressures/restriction from within the practice itself or from the PCT/Acute hospital trust will influence what we get .

Major postcode issues where I live - no Herceptin (I\'ve moaned enough about this one), no Taxanes for early bc. I did get arimidex without a fight earlier this week - (the wince I saw when she heard the cost of my Herceptin probably helped).

Guest user
Not applicable

Re: NICE & Aromatase Inhibitors

Hi Sarah My point exactly - the West of Scotland NHS shouldn\'t be hailing themselves as offering the best service by automatically testing all women when the results of the test are not acted upon.

Love Twinkle xoxo

Guest user
Not applicable

Re: NICE & Aromatase Inhibitors

Message for TWINKLE Hi Twinkle
As a west of scotland person waiting for her2 results,let me tell you I spoke at great lenghths with my BC nurse who assured me Scotland well the west of at least do not operate a postcode lottery.........
If I need Herceptin I will definatly get it,I felt very reassured untill I see the oncologist who told me if I am her2 + I will definatly not recieve Herceptin.
I am real angry not only that you should automatically recieve drugs you need but also the botch of info avaliable which depends on who you are ,where you live, what day it is , and who told you.It is totally unfair Calarity is what needed,how dare you become the victim of a doctors rant regarding cost of your medication.None of us choose to have cancer but we would all like the best treatments avaliable to us.It is a farce.
I dont normally rant but I am annoyed and I have had a few bad days and I feel better know.
Thank You
Love to you all
Sarah x

Guest user
Not applicable

Re: NICE & Aromatase Inhibitors

Cost v Quality of Life Think you\'re right Daphne it is only licensed here in Scotland, what an awful system we have. NICE & SMC need to get their act together.

I absolutely agree that disease free time is significant sadly much more so to the patient than the medics I fear. There always seems to be a set of stats somewhere to backup cost issues & it\'s this they hide behind until people start challenging their decisions on other grounds.

Going off topic for a mo. a piece of info for the Scots amongst us (apparently) in the west of Scotland all women are now routinely tested for HER2 status - not that they\'ll get herceptin though. The sad thing is the testing comment was billed as a look at us, look how wonderful we are. Mmm not so wonderful is you find out you are HER2 + but won\'t be given herceptin.

Love Twinkle xoxo

Guest user
Not applicable

Re: NICE & Aromatase Inhibitors

Confusing CRUK have some info about the ATAC trial

http://www.cancerhelp.org.uk/help/default.asp?page=5267

It\'s confusing because it says here that Arimidex is licensed for early breast cancer in postmenopausal women in the UK and then talks about Aromatase inhibitors (of which Arimidex is one) having to still be considered by NICE. I still think it\'s only licenced in Scotland for use in early stage breast cancer, but I\'m happy to be corrected if anyone has more certain information.

I think it\'s probably true that scientists don\'t yet know whether overall survival rates are better with Aromatase inhibitors than Tamoxifen as people have been taking Tamoxifen for many more years than Aromatase inhibitors.

However, Aromatase inhibitors have different, arguably more acceptable side effects than Tamoxifen and if they protect people from recurrence for longer than Tamoxifen, that tells us that the quality of life of a significant number of patients may be better on Aromatase inhibitors (both physically and psychologically) so I think that justifies the additional cost of Aromatase inhibitors. If the NHS gets more benefit from Aromatase inhibitors (patients keep well for longer, less money spent on dealing with side effects) they shouldn\'t be surprised that the drugs are more expensive.

Guest user
Not applicable

Re: NICE & Aromatase Inhibitors

Arimidex I was prescribed this by my Oncologist with no discussion as to cost/availability etc and if the joint pains were as a result of the Arimidex he would have changed it to Exemestane (think that\'s how you spell it) which is even more expensive.

I must admit that I didn\'t realise how \'new\' Arimidex was until I saw Daphne\'s message; I thought it had been around longer and that it was just standard treatment for post-menopausal women.

Guest user
Not applicable

Re: NICE & Aromatase Inhibitors

Hi Daphne I was at a meeting yesterday where there was a guest Consultant who was talking about the myths in the media tamoxifen V arimidex being one. He showed us the stats from the ATAC trial where it shows that arimidex has better results in disease free time but that overall survival was the same, hence the reluctance to prescribe arimidex as it\'s 80 times more expensive.

I don\'t know anything of the ATAC trial so don\'t know if his info. is correct...?

Love Twinkle xoxo

Guest user
Not applicable

Re: NICE & Aromatase Inhibitors

Death Row Jane, yes go on, emotional blackmail might get a faster result!

As ChristineMH has mentioned before, much research seems to focus on areas which are potentially lucrative.

Perhaps you need to talk to drugs companies and make them realise how many people could benefit if they found a treatment.

Guest user
Not applicable

Re: NICE & Aromatase Inhibitors

Taxanes too There is also a postcode lottery about using the taxane chemotherapies (taxol and taxotere) for primary breast cancer where appropriate. Its only now 2 plus years after tretament that I realise how lucky I was to get both AC and taxotere for my aggressive loads of nodes triple negative cancer. Don\'t have details but know it happens...

Do you think if I say I\'m on \'death row\' someone will fund some research on triple negatives?

Jane

Guest user
Not applicable

Re: NICE & Aromatase Inhibitors

NICE & Aromatase Inhibitors The problem with all the focus on one big-hitter like Herceptin is that other things that need sorting out get overlooked. Like what\'s happening about the Aromatase inhibitors Armidex & Letrozole.

Do you remember the ATAC trial? This is the 5 year study on 9000 women that started in 2000 and concluded tin 2004 that Arimidex (aka Anastrozole) was more effective than Tamoxifen at preventing a breast cancer recurrence in post-menopausal women.
Then we have Letrozole (aka Femara), which, in a Canadian trial, has shown a small reduction in breast cancer incidence in post-menopausal women who\'ve had 5 years on Tamoxifen. Some studies are looking at whether 2-3 years of Tamoxifen, followed by Letrozole for post- menopausal women is more effective than 5 years of Tamoxifen.

Both Arimidex and Letrozole have side effects and long term side effects are unknown as nobody\'s been on them for that long. NICE is currently considering Aromatase Inhibitors - guidance expected November 2006 (if I\'ve interpreted what they\'ve said on their website correctly).

Availability in England & Wales is that Health Authorities can prescribe Arimidex and Letrozole for early stage breast cancer on oestrogen positive, post-menopausal women at their own discretion, but they aren\'t obliged to until licensed by NICE for early breast cancer.

However, if you live in Scotland, you can get Arimidex now for early stage oestrogen receptive breast cancer because the SMC (Scottish equivalent of NICE) approved it in December 2005.

So, why do we have two drugs approval bodies in the UK (NICE & SMC), duplicating work and costing their respective taxpayers more money than would be required if they didn\'t duplicate effort? Also we have another classic postcode lottery.

Another thread has discussed whether it was appropriate for the term on \"death row\" to be used in the Judicial Review for Herceptin. While the availability of breast cancer cancer drugs remains such an unfair and arbitrary process, I I think it\'s entirely reasonable if patients want to use very emotive terms.

I have a friend who finished 5 years or Tamoxifen last year and was prescribed Letrozole by her oncologist. Every time she goes to her GP for a repeat prescription, they moan about the cost so last time she went, she made a \"death row\" type comment. She shouldn\'t have had to do this. If a cancer specialist prescribes a drug, GPs shouldn\'t be challenging it, but it worked, she got the prescription.

Guest user
Not applicable

NICE & Aromatase Inhibitors

NICE & Aromatase Inhibitors