Enzalutamide and Abiraterone

User

Posted 03 Nov 2014 at 14:43

Hello,

Please could you help me with any feedback concerning Circulating Tumour Cell blood tests? Has anyone had any of these tests on the NHS or privately? I am interested in finding some means of arranging a blood test that will identify the androgen receptor subtype known as AR-V7. Is anyone aware of any facility in the UK that offers this test?

There has been recent publicity concerning a trial involving 31 men treated with Enzlutamide and 31 treated with Abiraterone. A CTC blood test identified those who were AR-V7 positive and those that were negative. The men who were AR-V7 positive had poorer PSA responses when treated with Enzalutamide or Abiraterone.

I would also like to hear from anyone who has been turned down for Enzalutamide or Abiraterone treatment on the NHS (England) and whether it is possible to obtain these medicines privately. I understand that they are extremely expensive, but desperate times call for desperate measures.

Thank you so much for any assistance that you may be able to provide during this very difficult time. I am very grateful.

Best wishes

User

Posted 04 Nov 2014 at 20:34

Hi NJ,

CTC is trial stuff only as far as I know. Mine was part of a trial. They couldn't find any !

You could try the Royal Marsden to ask your question.

I think the John Hopkins clinic in the U.S. is looking at a gene mutation which helps guide on Enzalutamide working or not. But haven't heard of anything else here.

Your GP will be able to guide on costs I would think for private purchase of either. I'd suggest it might be better to buy the med if you can't get it on NHS & try it for say two months to see if it works. Rather than expensive & possible unreliable tests ? It's certainly not an ideal situation !

User

Posted 05 Nov 2014 at 19:48

Thanks Rob,

I'll contact the Royal Marsden, and discuss costs with my GP.

Best wishes

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Enzalutamide and Abiraterone

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