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Enzalutamide- current guidelines please

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User
Posted 13 Jan 2016 at 14:08
My dad was diagnosed in 2001 with locally advanced Pca. He had RT, and has been taking HT for some years. His psa has just started to rise again now. He's 75.

He is quite proactive in that he wants to know the answers, but not computer literate, so he wants me to do it for him! He's seen something in the press about enzalutamide. I've looked this up, and as I understand it, it is not currently licensed unless chemo has been given already. My dad is not ready for this- his psa is only at 2 currently, but his doubling time is increasing.

Please could someone answer his questions, which are below

1. Is it available on the nhs? If so, under what conditions

2. If it's not available for him, are nice currently looking at it?

3. Can he get it privately? If so, how much does it cost, and how does he go about it

4. How long should he take it for?

Thanks,

Louise

User
Posted 13 Jan 2016 at 15:11

http://prostatecanceruk.org/about-us/news-and-views
This link will take you to the recent news about Enzalutamide: Nice have decided that it should now be available to men with advanced PCa without requiring them to have had prior chemotherapy.

What I can't tell you is whether it is appropriate for your Dad's case. It may be that it is only helpful in cases where the cancer has advanced to the bones and/or other organs.

If it would help him, he can probably get it on the NHS. If they won't prescribe it for him, this will be because there would be no proven benefit at this stage. He can ask his doctor about this.

It is a new and very expensive drug. It costs about £100 a day, so it's not something that many people could afford, and for the same reason it's not something the NHS will prescribe unless it's likely to help. Men take it for as long as it's effective at controlling the advance of the cancer, which is something like a year on average.

I'm sure someone else here will be along soon to tell you more.

Marje

User
Posted 13 Jan 2016 at 19:08

Louise,

I'm on Enzalutamide and I haven't had chemo. Click on my name to see more information.

To answer your questions:

1. My Enzalutamide is supplied by the NHS. I don't know whether the cost is met from the NHS budget or from the Cancer Drugs Fund. I have no idea what the conditions of supply are. I do know my Onco said she wanted it for me; the Multi Disciplinary Team agreed with her, and hey presto, the tablets were supplied.

2. Question not relevant given answer 1. above.

3. Possibly but you would probably need to see an Onco privately in order to get it. It will cost a minimum of £3,000 for 28 days supply and probably a lot more than £3,000. Do you trust your current Onco? If you do and he/she says Enzalutamide isn't right for you father, ask why, then consider carefully whether you want a second opinion.

4. As long as it keeps him healthy. I've been on it for 12.5 months.

I hope this helps.

ColU

User
Posted 13 Jan 2016 at 21:03

Hi Louise
I've been on Enzalutamide since dx in January. 2015. I take it together with Prostap as part of the Stampede J trial.
I did also take abiraterone for the first 6/7 months but this gave me bowel issues.
So far I'm fine and PC seems under control. Psa is .07.
My side effects are hot flushes and fatigue. I do however keep these at bay as much as possible by running.
I was told that the trial with the Enzalutamide would last 2 years (presumably an estimate of when it stops being effective?)

I hope this helps some

Paul

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User
Posted 13 Jan 2016 at 15:11

http://prostatecanceruk.org/about-us/news-and-views
This link will take you to the recent news about Enzalutamide: Nice have decided that it should now be available to men with advanced PCa without requiring them to have had prior chemotherapy.

What I can't tell you is whether it is appropriate for your Dad's case. It may be that it is only helpful in cases where the cancer has advanced to the bones and/or other organs.

If it would help him, he can probably get it on the NHS. If they won't prescribe it for him, this will be because there would be no proven benefit at this stage. He can ask his doctor about this.

It is a new and very expensive drug. It costs about £100 a day, so it's not something that many people could afford, and for the same reason it's not something the NHS will prescribe unless it's likely to help. Men take it for as long as it's effective at controlling the advance of the cancer, which is something like a year on average.

I'm sure someone else here will be along soon to tell you more.

Marje

User
Posted 13 Jan 2016 at 19:08

Louise,

I'm on Enzalutamide and I haven't had chemo. Click on my name to see more information.

To answer your questions:

1. My Enzalutamide is supplied by the NHS. I don't know whether the cost is met from the NHS budget or from the Cancer Drugs Fund. I have no idea what the conditions of supply are. I do know my Onco said she wanted it for me; the Multi Disciplinary Team agreed with her, and hey presto, the tablets were supplied.

2. Question not relevant given answer 1. above.

3. Possibly but you would probably need to see an Onco privately in order to get it. It will cost a minimum of £3,000 for 28 days supply and probably a lot more than £3,000. Do you trust your current Onco? If you do and he/she says Enzalutamide isn't right for you father, ask why, then consider carefully whether you want a second opinion.

4. As long as it keeps him healthy. I've been on it for 12.5 months.

I hope this helps.

ColU

User
Posted 13 Jan 2016 at 21:03

Hi Louise
I've been on Enzalutamide since dx in January. 2015. I take it together with Prostap as part of the Stampede J trial.
I did also take abiraterone for the first 6/7 months but this gave me bowel issues.
So far I'm fine and PC seems under control. Psa is .07.
My side effects are hot flushes and fatigue. I do however keep these at bay as much as possible by running.
I was told that the trial with the Enzalutamide would last 2 years (presumably an estimate of when it stops being effective?)

I hope this helps some

Paul

User
Posted 13 Jan 2016 at 22:39
Thanks all.

I'm not even sure if the drug is suitable for my father. His last bone scan remained clear, and as far as we know it hasn't moved beyond the seminal vesicles. It would seem he needs to ask the questions of his onco, and I need to do some research.

If anyone has any idea what the right questions are, I'd appreciate it!

User
Posted 17 Jan 2016 at 13:35

Hi Louise,
Dad is jumping the gun. Enzo is something to keep in the bag for future years, not for now. It seems that your dad is not yet hormone resistant so as long as the PSA remains fairly low, scans don't cause any alarm and the doubling time doesn't get to 4 or 6 weeks, his current treatment is working. When it looks like the hormone is starting to fail, they might add another hormone which boosts the whole process. It is only once those things have all failed that dad might start to think about Enzo or abiraterone.

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

 
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