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NICE guidelines on Aberaterone and Enzalutamide

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User
Posted 23 May 2014 at 15:06

Hi,

My dad was briefly on Abiraterone as part of the STAMPEDE trial but stopped taking it after a few months due to the side effects (rather than disease progression). He left the trial and was treated with HT only until last year when Casodex when added when his PSA began to rise.

That did not work for long and he has just started his first round of chemotherapy. We are hoping this does the job but can anyone explain what the situation will be if it does not? Is he now not eligible for Abiraterone as he had it for a short while on STAMPEDE, and will he be refused Enzalutamide based on the fact that he (briefly) was taking Abiraterone? I'm confused and a little worried that chemo is now our only option.

Many thanks in advance,

Kate 

User
Posted 25 Sep 2014 at 23:13
I think part of the problem is that NICE (or not so) have made so many u turns on these treataments that even some of the Oncologists have lost the plot.

As I understand it the ruling that caused so much anger got overturned but for some people it is still not available for example Allister who has fought so hard for every man with this illness is still being denied this treatment based solely on where he lives. Completely unacceptable and unfair. He is however the absolute person to listen to on what can and cannot be offered if your Oncologist choses to do it, so re read his post and take note of the article which you can then show to your Oncologist if you need to.

I wish you luck as nobody in this first world country should have to pay for medication for cancer no matter how much it costs.

xx

Mo

Edited by member 26 Sep 2014 at 13:39  | Reason: Not specified

User
Posted 30 Nov 2014 at 21:33
Hi, late in the conversation but I asked my GP last week the same ( by some bit of luck my GP is an expert in prostate cancer in GP terms so is quite alive to what's what), he said the price has come down a lot and is now £3k pm so still lots but it is going in the right direction. I guess the more the drug is used the less the manufacturers have to make per tablet to cover their R&D costs as these must have been paid for by now. If stampede is successful I would imagine that the price will go lower still as demand will increase.

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

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User
Posted 23 May 2014 at 17:42
I believe that the Abi rule has been overturned due to a petition co-ordinated by the owners of this site against NICE, so it is certainly worth speaking to your onco about which is the best way forward for your dad.

Good luck!

Alison

User
Posted 28 Aug 2014 at 09:29

The health secretary, Jeremy Hunt, has announced an £80M extension of the Cancer Drugs Fund for England and also the inclusion of new treatments such as Abiraterone pre Chemo.

www.dailymail.co.uk/news/article-2736232/Hunt-demands-shake-stop-NICE-blocking-life-extending-drugs-cancer-Health-Secretary-announce-40-increase-resources-pay-treatments.html

Whilst I am glad for my England based friends it is yet another kick in the teeth to the rest of the UK. remember, this money comes from CENTRAL treasury NOT the NHS England budget and as such comes out of the pockets of ALL UK tax payers. Rant over! 

http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-yell.gif

X

Nil desperandum

Allister

User
Posted 28 Aug 2014 at 10:45
Alister, It's about time we all got together and bombarded the Government with letters and emails until something is done to eradicate (not) NICE once and for all. Drugs that are proven effective should be available to ALL in the UNITED KINGDOM. It is time the Government started looking after the people who pay the taxes and stop handing out our hard earned money to despots in banana republics. It's a disgrace when certain politicians are attempting to enshrine in law 7% of our GNP to be given to foreign aid when people are dying needlessly early in this country. I have written to my MP (no answer yet) and am in the process of writing to the PM (but I keep having to tone down the content!) Lets all scream UMAN RITES!!!! End of another rant. Trevor
User
Posted 28 Aug 2014 at 16:53
Apologies for misspelling your name Allister
User
Posted 28 Aug 2014 at 23:16
Hear Hear Quantum !!!!!
User
Posted 25 Sep 2014 at 10:42

Well here we go again. After (not) N.I.C.E. allowed enzalutamide to be given to people who have had abiraterone N.H.S. England have now banned it's use to these people of which I am one. Abiraterone now stopped working for me and PSA climbing fast. Oncologist, who a month ago was all for it, obviously has been got at, and is now saying it is now no good as it hasn't been proved it does any good to patients who have been on abiraterone. Been prescribed steroid Deximethodone. No other treatment available. All down to money. There must be a lot of other people who have been on trials like me, and because of that are denied the latest treatment. Disgusting!

 

Edited by member 25 Sep 2014 at 10:48  | Reason: Not specified

User
Posted 25 Sep 2014 at 12:40

Is there any way that men can buy the Enz drug themselves?

 

I expect that it is expensive and certainly should not have to - but if all else fails (to get it) might be worth a look at.

Edited by member 25 Sep 2014 at 12:41  | Reason: Not specified

User
Posted 25 Sep 2014 at 15:50

My thoughts exactly Alison. I did ask Oncologist but got no satisfactory answer. My friend who is in same position as me also asked, and told me the Oncologist avoided the question. Will keep looking for a retailer.

User
Posted 25 Sep 2014 at 16:38

Have you considered asking your oncologist to write you a private prescription? You would pay the full cost of the drug. The following is taken from the NICE website

"Enzalutamide costs £2734.67 for 1 pack of 112 40‑mg capsules, (excluding VAT; 'British national formulary' [BNF] website accessed March 2014). Assuming a daily dose of 160 mg and a mean length of treatment of 8.5 months, the manufacturer estimated that the average cost of treatment with enzalutamide, based on the list price, is £25,269."

Not very encouraging to say the least.

User
Posted 25 Sep 2014 at 17:44

Good idea Tombryce.

You may have to see the Onco privately (if he runs a clinic) to get it, but worth asking.

We asked our Onco the same question and he just said that he would get us whatever we needed and not to worry, but however, times can change and they are so budget pressed that we do worry!

Please let us know how you get on and I will see what I can find out at next appointment.

 

**Obviously don't buy on the internet as may not be the drug it should be!**

Alison

Edited by member 25 Sep 2014 at 17:46  | Reason: Not specified

User
Posted 25 Sep 2014 at 17:56

Thanks Tombryce and Alison. See Oncologist in 4 weeks. Will let you know how I get on.

User
Posted 25 Sep 2014 at 23:13
I think part of the problem is that NICE (or not so) have made so many u turns on these treataments that even some of the Oncologists have lost the plot.

As I understand it the ruling that caused so much anger got overturned but for some people it is still not available for example Allister who has fought so hard for every man with this illness is still being denied this treatment based solely on where he lives. Completely unacceptable and unfair. He is however the absolute person to listen to on what can and cannot be offered if your Oncologist choses to do it, so re read his post and take note of the article which you can then show to your Oncologist if you need to.

I wish you luck as nobody in this first world country should have to pay for medication for cancer no matter how much it costs.

xx

Mo

Edited by member 26 Sep 2014 at 13:39  | Reason: Not specified

User
Posted 26 Sep 2014 at 12:42

Hi Guys,

I was just at the Park hospital Nottingham and asked the question, how much is  enzalutamide on a private prescription £5,100 for thirty days supply, ouch !!

Hope that helps

Si

 

Don't deny the diagnosis; try to defy the verdict
User
Posted 30 Nov 2014 at 21:33
Hi, late in the conversation but I asked my GP last week the same ( by some bit of luck my GP is an expert in prostate cancer in GP terms so is quite alive to what's what), he said the price has come down a lot and is now £3k pm so still lots but it is going in the right direction. I guess the more the drug is used the less the manufacturers have to make per tablet to cover their R&D costs as these must have been paid for by now. If stampede is successful I would imagine that the price will go lower still as demand will increase.

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 01 Dec 2014 at 08:58

This needs checking - but I have read that Enzi is not available in England to people who have had Abi first, but in Wales it is up to the individual Onco.

So much in the papers this week about the Government cutting spend on research and treatment that it is very concerning. We may have to start looking to France/other countries for their help!

 

Alison

User
Posted 01 Dec 2014 at 11:27

Said I would let you know outcome of my appointment.
Saw Oncologist who told me in no uncertain terms Enzalutamide was NOT available as I had been on Abiraterone.
NHS England have banned it on cost grounds. Prescribed Dextamethosone.
Don't know what plan B is yet but working on it.
Been advised £3000 plus VAT (can you believe VAT!!! on staying alive) for Enzalutamide. Written to MP's etc with not much luck (didn't really expect much help anyhow) and will continue to keep the fact high profile, that In Great Britain the taxpayers are allowed to die through lack of proper medical care funding, whilst the same taxpayers can fund India's moon rocket and Nigeria's space shot. Rant over

User
Posted 08 Mar 2016 at 16:55
Originally Posted by: Online Community Member
Have you considered asking your oncologist to write you a private prescription? You would pay the full cost of the drug. The following is taken from the NICE website

"Enzalutamide costs £2734.67 for 1pack of 112 40‑mg capsules, (excluding VAT; 'British national formulary' [BNF] website accessed March2014). Assuming a daily dose of 160mg and a mean length of treatment of 8.5months, the manufacturer estimated that the average cost of treatment with enzalutamide, based on the list price, is £25,269."

Not very encouraging to say the least.

What do I need from my oncologist to buy this drug through NHS. I believe if you get a private prescription it is around £5000 per moth.

User
Posted 08 Mar 2016 at 17:44

Hello Kate
Like your Dad I was also started on Stampede with HT, abiraterone and Enzalutamide. Also like your Dad I had problems early on with side effects from abiraterone and my onco agreed for me to stop taking it. I asked if this meant going off the Stampede Trial. It didn't and I'm still on the trial but just taking HT (Prostap) and Enzalutamide.
I also asked that as and when things stop working whether abiraterone would still be available to me. My onco said yes it would.
I've now been on HT and Enzalutamide for 15 months with low psa.

Maybe it's just down to having a helpful onco I don't know.

I hope this helps and hope you get the best available treatments.

Paul

User
Posted 08 Mar 2016 at 19:18

David, as you have already had abiraterone and it has stopped working, you are unlikely to get Enzo on the NHS. Research suggests that when abby fails, enzo is unlikely to work which is why the NHS won't usually fund both. However, there is no reason not to ask about it at your next appointment with the oncologist.

You might do well to change your user name - we occasionally get some weirdos joining the site and your email address displayed so publicly makes you vulnerable to spammers and cruel people :-(

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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