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Enzalutamide?

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User
Posted 04 Jan 2019 at 15:27

Hi, 

Dad's been on decapeptyl and recently bicalutamide after developing an infection and being in some pain which has now cleared up. His psa has went from 19 in November to 36. He's due to see the oncologist on Monday thankfully. His psa never went below 19 this whole time with starting psa of 260. 

At his last appointment she had said the next step would be enzalutamide. Can you share some of your stories on this drug?

It's taken us by surprise this reading as he's looking and feeling quite well all things considered and any pain he had before is now well managed. 

I'm hoping psa isn't an accurate indicator and the disease hasn't progressed. Please give me some reassurance 😔 

Thanks 

 

Miffy
User
Posted 04 Jan 2019 at 21:26

Hi Miffy27,

Enzalutimide is a drug which several years ago was hard fought over to get NICE approval. It is quite expensive and well worth giving it a go. You take 4 (very large) capsules daily, so no needles or drips!

Although I only had eight months of it before it stopped working, it initially brought my PSA right down. 

The main side effect for me was the usual tiredness, although was not as bad as Docetaxel or Cabazitaxel. It allowed me to have as near normal life as possible and it was great not having to visit the hospital for regular chemo. 

Although I  did not have it as long as I would have liked, men on this forum have been on it for a considerable period so I would not hesitate in telling you to embrace the opportunity and regain some of your life back!

Best regards

User
Posted 08 Jan 2019 at 20:11
That's not quite right Miffy. If he reacts badly to the abiraterone or the side effects force him to stop taking it within 12 weeks of starting, he may be able to switch. But if the abi fails, he won't get enza as once one fails the other will also fail very quickly.

Abi and enza both have similar results though so whatever the reason for your onco deciding that abi was the best option, it will have been based on your dad's particular circumstances.

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

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User
Posted 04 Jan 2019 at 21:26

Hi Miffy27,

Enzalutimide is a drug which several years ago was hard fought over to get NICE approval. It is quite expensive and well worth giving it a go. You take 4 (very large) capsules daily, so no needles or drips!

Although I only had eight months of it before it stopped working, it initially brought my PSA right down. 

The main side effect for me was the usual tiredness, although was not as bad as Docetaxel or Cabazitaxel. It allowed me to have as near normal life as possible and it was great not having to visit the hospital for regular chemo. 

Although I  did not have it as long as I would have liked, men on this forum have been on it for a considerable period so I would not hesitate in telling you to embrace the opportunity and regain some of your life back!

Best regards

User
Posted 07 Jan 2019 at 22:56
Hi Miffy

I was diagnosed in Dec 2014 with a psa of 199 which went up to 235by the time I started treatment.

I was told my PCa had spread and that I could not have radiotherapy or any ops.

The option was HT.

I was also offered a place on a Stampede Trial which included Abiraterone and Enzalutamide.

I started the Trial in January.

The abiraterone didn't agree with me so I dropped it.

Ever since I've been taking HT plus enzalutamide.

My psa dropped very quickly to .06 and has remained there ever since.

My next Oncologist appointment is next week.

I've had most of the side effects but for me enzalutamide has worked so far

Best of luck with your Dads treatment

Paul

User
Posted 08 Jan 2019 at 10:12

Thanks guys, Dad had his appointment yesterday and was told he would be going down the abiraterone route instead. My understanding though is that if he doesn't respond well to this he can still try enzalutamide? Very greatful that this treatment is available. Glad to hear you're doing so well on it.

Miffy
User
Posted 08 Jan 2019 at 20:11
That's not quite right Miffy. If he reacts badly to the abiraterone or the side effects force him to stop taking it within 12 weeks of starting, he may be able to switch. But if the abi fails, he won't get enza as once one fails the other will also fail very quickly.

Abi and enza both have similar results though so whatever the reason for your onco deciding that abi was the best option, it will have been based on your dad's particular circumstances.

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

 
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