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Enzalutamide - advice please

User
Posted 03 Jul 2015 at 00:20
Hi,
Dads had a psa rise that has tripled in 3 months from 4 to 15! He had various hormones inc casodex, and now on stillbisterol which is failing,
Increase In bone Mets and pain over last month - the onco suggesting enzalutsmide And zometa infusion - why is chemo not been used and does this mean aberiterone cannot be used in the future????
User
Posted 03 Jul 2015 at 14:22

Jo - please click on my name to see my profile, it has similarities to your Dad.

When I was first diagnosed I made it clear that my priority was quality of life rather than quantity of life. Rightly or wrongly I therefore turned down the opportunity of going on Stampede because to me it felt like we would be firing off all our bullets in one go. Again who knows whether I was right or wrong but I'll live (or die) with that decision.

Given my priorities my Onco advised the HT route. I'll continue on that route until there's virtually nothing left to try apart from Chemo. Thus it will be an easy decision to make when that time comes.

My quality of life has been really good for the last two years, hopefully it can be the same for your Dad on Enzo. There have been a couple of downsides with Enzo which you can see if you read previous posts I've made.

It costs the Cancer Drugs Fund about £90 per day for the Enzo I swallow. I reckon its a good bet your Dad's Onco would only be suggesting he does Enzo now and keep Chemo for later because he/she thinks it's the best option for your Dad's quality of life.

Regarding Enzo v Abby, we do only get one shot at one of these. From the little I understand most Onco's seem to prefer Enzo to Abby.

I hope this helps.

User
Posted 03 Jul 2015 at 20:09

These are my last PSA readings ,


31st October 2014 PSA 5.6
23rd January 2015 PSA 23
23rd February 2015 PSA 43
24th February 2015 PSA 73 Started Preside Trial taking Enza !!
25th March 2015 PSA 4.1
20th May 2015 PSA 0.4


I will be offered Abbey next ... then Chemo after that , i have been on Enza for about 6 months now ... side effect are minimal .

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User
Posted 03 Jul 2015 at 13:20

This is my likely pathway in the near future. Chemo being kept in the box for later and for me it helps me stay in work. Enzo rather than Abby because I am a type 2 diabetic and Abby with steroids is more problematic with blood sugar control. Currently I won't get Abby later on unless by then the rules have changed. Your Dad may be in a different situation but it sounds like a similar thinking process from my onco.

User
Posted 03 Jul 2015 at 14:22

Jo - please click on my name to see my profile, it has similarities to your Dad.

When I was first diagnosed I made it clear that my priority was quality of life rather than quantity of life. Rightly or wrongly I therefore turned down the opportunity of going on Stampede because to me it felt like we would be firing off all our bullets in one go. Again who knows whether I was right or wrong but I'll live (or die) with that decision.

Given my priorities my Onco advised the HT route. I'll continue on that route until there's virtually nothing left to try apart from Chemo. Thus it will be an easy decision to make when that time comes.

My quality of life has been really good for the last two years, hopefully it can be the same for your Dad on Enzo. There have been a couple of downsides with Enzo which you can see if you read previous posts I've made.

It costs the Cancer Drugs Fund about £90 per day for the Enzo I swallow. I reckon its a good bet your Dad's Onco would only be suggesting he does Enzo now and keep Chemo for later because he/she thinks it's the best option for your Dad's quality of life.

Regarding Enzo v Abby, we do only get one shot at one of these. From the little I understand most Onco's seem to prefer Enzo to Abby.

I hope this helps.

User
Posted 03 Jul 2015 at 19:04

Hi Jo, the onco who came to speak at our Leicester get-together was asked about this and he said that although there are exceptions, generally if Abby stops working then the Enzo would not be successful either and that this is why NICE made the 'either/or' decision.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 03 Jul 2015 at 20:09

These are my last PSA readings ,


31st October 2014 PSA 5.6
23rd January 2015 PSA 23
23rd February 2015 PSA 43
24th February 2015 PSA 73 Started Preside Trial taking Enza !!
25th March 2015 PSA 4.1
20th May 2015 PSA 0.4


I will be offered Abbey next ... then Chemo after that , i have been on Enza for about 6 months now ... side effect are minimal .

User
Posted 03 Jul 2015 at 20:33

Thank you for the replies, I do feel anxious to be honest that its the either /or with regards to abby /enzo, Dad is having symptoms with his bone pain and the odd niggles, but overall is in good health and he enjoys life and has an active social life, so I guess this is why they holding off on the chemo, fingers crossed for good results..


Best wishes to all.x

User
Posted 07 Jul 2015 at 19:52

Hi Jo


Please see my profile for my husband's treatment plan. he has now been on Enzalutamide for a year following chemo and so far, touch wood, the magic beans continue to work well. He certainly has minimal side effects with Enza so has a good quality of life which allows him to still fell walk, ride his motorbike and build sheds! Long may it continue.


Best wishes


 


Glen

User
Posted 07 Jul 2015 at 22:57

Rightly or wrongly I have been denied Enzalutamide as I was given Abby (didn't work). At that time there was no choice (Enza not approved) and I was assured that it would not exclude Enza down the line http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-yell.gif. In hindsight, had I had a choice, I would go for Enza over Abby. OK, I now know that Abby doesn't work for me but given the clinical data (and I have a great deal of experience in this field), I would choose Enza every time http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-yell.gif

Nil desperandum
Allister
User
Posted 07 Jul 2015 at 23:34

Allister, if you moved (albeit temporarily) to England, would you then be able to apply via the drugs fund?

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