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Purchase of Arbiraterone

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User
Posted 07 May 2019 at 16:55

Hi All,  I am new to the Forum but am seeking advice about arbiraterone.  Briefly, had prostate op Nov 17 after Gleason Score 9 and one positive lymph positive node.   All well initially but last Apr 18 PSA started to rise but very slowly and scan showed microscopic traces of metastatic cells in two lymph glands.  No treatment to date;  had a PMSA scan at St Thomas Hospital Westminster last Friday and am awaiting results.  My oncologist would like to give me Arbiraterone when starting treatment mainly because I have suffered with ulcerative colitis and may be intolerant to chemo.  However, here's the catch that most of us already know that it is not funded for first line treatment.  My oncologist said that she would manage treatment if I purchased the tablet but the UK cost is prohibitive.  Has anyone purchased the tablet from abroad, eg India where it is decidedly cheaper.  I appreciate that buying from abroad carries risks not least the efficacy of the tablet but if there is anyone with a satisfactory experience of buying from abroad I would be very grateful for info..

Regds

WilliamR

 

User
Posted 10 May 2019 at 17:21

Hi All,

Thanks for the inputs.  I presume that the Irish rules for financial approval are different from those in the UK and have to be approved by NICE.  I agree with the post by Kita and that is apparently the approach that my oncologist is taking ie those with early metastatic prostate cancer would benefit when taken with ADT and that was the outcome from the Stampede trial.  My problem remains in that funding is not approved unlike your father Kita and that is why I am still looking to purchase arbiraterone.   It is available at a fraction of the cost in India but it would be really good if someone had purchased this drug before and could give some assurances.   If not it will be a judgement call but I consider it worth the cost and the risk of purchasing abroad if it will give me another year or so.  Seeing oncologist next week when scan results will show spread on the back of a PSA which although a small number 3.08 has risen by 1.08 in 3 months.  We shall see!

 

User
Posted 11 May 2019 at 12:42
Thanks for the input. I have investigated a couple of avenues, one in Cyprus where I have had a holiday home for many years, but they follow the same treatment protocol as the UK ie second line treatment. Also, all the European countries, apart from the UK, belong to the European Medicines Agency where the price of Arbiraterone is approximately the same in every country. However, I know that the price in Cyprus is significantly below the UK cost per month and they still do not offer it as first line. I suspect that the price in some other European countries makes it more affordable to offer as first line treatment. Unfortunately, with most other European countries there is a bi-lateral agreement on health and it is very difficult to jump onto an overseas arrangement unless you live in that country and the UK agree to pay for the treatment. With the need for regular check ups with Arbiraterone cherry picking between two countries would be nigh impossible. But thank you anyway for your input.
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User
Posted 07 May 2019 at 20:47
There is a reason why Abiraterone isn’t funded as a first line treatment; it works best on castrate resistant prostate cancer. Save your money, go for androgen deprivation and then if/when that fails you will still have abi or enzo to fall back on. Or get a second opinion from an oncologist at one of the hospitals involved with the Stampede trial in case you are suitable and can get it that way.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 May 2019 at 10:20
Thank you Lyn. It is something I will put to my oncologist next week as I am not sure given your comments why she thought that arbiraterone was a better first line treatment. My hospital is part of the Stampede trial so will cover that at the same time. More info helps so thanks.
User
Posted 09 May 2019 at 14:18

Check this out first!
http://prac.co/l/yxrp85oo

 

Abiraterone used in the non castrate environment delivers significant benefits

User
Posted 09 May 2019 at 15:39
Still only talking fractions of a year and they bandy the word significant around. I do find that a bit hyped.
User
Posted 09 May 2019 at 21:10

Originally Posted by: Online Community Member
Still only talking fractions of a year and they bandy the word significant around. I do find that a bit hyped.

"The authors report long-term survival outcomes among patients with newly diagnosed high-risk metastatic prostate cancer treated with abiraterone/ prednisone plus androgen-deprivation therapy (ADT) and those treated with ADT alone. Abiraterone/prednisone plus ADT was associated with longer overall survival compared with ADT alone (53.3 months vs 36.5 months)."

I make that a survival of an extra 17.2 months (or a year and 5.2 months) or am I reading it wrong?

User
Posted 10 May 2019 at 06:22
My maths is terrible at the moment due to being very tired. Thanks for the correction. I still think significant is over egging it. Significant should be in multiple years. I see regular pharma reports on my news feed about drug trials using such words and I get the feeling the words are more for shareholders and investors than patients.
User
Posted 10 May 2019 at 09:28
It certainly strikes me, Pete, that someone with a life expectancy of three years would regard an extra year and a half of life as pretty significant!

Best wishes,

Chris

User
Posted 10 May 2019 at 13:18

It's a 50% increase in life expectancy with improved QOL - sounds pretty significant to me.

 

Edited by member 10 May 2019 at 13:18  | Reason: Not specified

User
Posted 10 May 2019 at 13:31

Why can it not be funded . I’m in Ireland and my father is getting it next week as a first line treatment for free 

User
Posted 10 May 2019 at 17:21

Hi All,

Thanks for the inputs.  I presume that the Irish rules for financial approval are different from those in the UK and have to be approved by NICE.  I agree with the post by Kita and that is apparently the approach that my oncologist is taking ie those with early metastatic prostate cancer would benefit when taken with ADT and that was the outcome from the Stampede trial.  My problem remains in that funding is not approved unlike your father Kita and that is why I am still looking to purchase arbiraterone.   It is available at a fraction of the cost in India but it would be really good if someone had purchased this drug before and could give some assurances.   If not it will be a judgement call but I consider it worth the cost and the risk of purchasing abroad if it will give me another year or so.  Seeing oncologist next week when scan results will show spread on the back of a PSA which although a small number 3.08 has risen by 1.08 in 3 months.  We shall see!

 

User
Posted 10 May 2019 at 19:32

Maybe a long shot but while your still in the EU would you be entitled to treatment in another Eu country under cross border directive 

User
Posted 11 May 2019 at 12:42
Thanks for the input. I have investigated a couple of avenues, one in Cyprus where I have had a holiday home for many years, but they follow the same treatment protocol as the UK ie second line treatment. Also, all the European countries, apart from the UK, belong to the European Medicines Agency where the price of Arbiraterone is approximately the same in every country. However, I know that the price in Cyprus is significantly below the UK cost per month and they still do not offer it as first line. I suspect that the price in some other European countries makes it more affordable to offer as first line treatment. Unfortunately, with most other European countries there is a bi-lateral agreement on health and it is very difficult to jump onto an overseas arrangement unless you live in that country and the UK agree to pay for the treatment. With the need for regular check ups with Arbiraterone cherry picking between two countries would be nigh impossible. But thank you anyway for your input.
User
Posted 13 May 2019 at 10:09

Chris 

Thank you for changing my perspective. Even if you have this bloody disease it shows you sometimes don’t understand someone else’s context.

User
Posted 13 May 2019 at 18:03
William R: have you seen this?

https://www.cancer.gov/news-events/cancer-currents-blog/2018/prostate-cancer-abiraterone-food-low-dose

Prostate Pete: significant in a statistical sense does not mean big, it means very unlikely to have occurred by chance.

User
Posted 13 May 2019 at 19:16
DW

Thanks. If I could have scored less than zero on stats at school, I would have!

My son spent ages trying to explain Bayesian probability which also has a bearing on this but it was like concord - two miles above my head.

User
Posted 16 Jul 2019 at 11:39

Hello, would anyone have any knowledge of Abiraterone available to purchase? 

 

User
Posted 16 Jul 2019 at 13:52
You can get it on a private prescription for about £3000 per month but you would also have to purchase prednisone to go with it and would probably need to see an oncologist privately to get the prescription. However, abiraterone should be available on the NHS to anyone for whom it is suitable so if you are having trouble accessing it, this may be because it is not appropriate in your case.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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