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Post Chemo & Enzalutamide

User
Posted 19 Dec 2014 at 23:25

Ahmed, I hope you get good results, keep us informed.


 


Glen

User
Posted 13 Jan 2015 at 20:35

Originally Posted by: Online Community Member
Thanks so much for the update, it's really helpful to have a view on Enzo as few people have reported on here about it.

Here's hoping the PSA is staying down too.

Best wishes
Allison


I've just started Enzo so I'll add my experiences to this thread in order to provide more information about it. Please see my profile for my history to date. Basically I've been very lucky so far, advanced prostate cancer diagnosed but I've had little change to my pre-PCa physical condition. The only side effects I've had from all the hormone treatment so far is mild flushes and very mild fatigue. This holds true for the Enzo. Blood test on 16/1/15 to make sure the Enzo isn't damaging my liver, if so, the Onco will say stop taking it. Then the next consultation is on 29/1/15 when we will find out if the Enzo is having any effect on PSA levels.

Edited by member 13 Jan 2015 at 20:53  | Reason: Not specified

User
Posted 13 Jan 2015 at 20:45

My health trust have done a U turn and decided to refuse Enzalutamide to men who have previously had Abiraterone, regardless of the circumstances http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-undecided.gif


 


I feel a campaign coming on ......

Nil desperandum
Allister
User
Posted 13 Jan 2015 at 21:05

Alli,

I'm surprised. Could this help:

http://www.england.nhs.uk/ourwork/pe/cdf/cdf-drug-sum/

and within this page:

http://www.england.nhs.uk/wp-content/uploads/2014/08/ncdf-summ-abiraterone.pdf

which says:

In view of the absence of or weakness of the current evidence, the CDF panel concluded that neither the use of abiraterone after chemotherapy and enzalutamide nor the use of abiraterone after enzalutamide pre-chemotherapy should be approved for CDF use. The exception would be in patients in whom enzalutamide has had to be stopped within 3 months of its start solely as a consequence of dose-limiting toxicity and in the clear absence of disease progression.

and

http://www.england.nhs.uk/wp-content/uploads/2014/08/ncdf-summ-enzalutamide-abir.pdf

which says:

In view of the absence of or weakness of the current evidence, the CDF panel concluded that neither the use of enzalutamide after chemotherapy and abiraterone nor the use of enzalutamide after abiraterone pre-chemotherapy should be approved for CDF use. The exception would be in patients in whom abiraterone has had to be stopped within 3 months of its start solely as a consequence of dose-limiting toxicity and in the clear absence of disease progression.

User
Posted 13 Jan 2015 at 22:15

The problem is two fold:


1: The CDF only applies to England (although most of the money come from central treasury and not NHS England) http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-frown.gif


 


2: Access to these drugs elsewhere in the UK is via a process called IFR (Individual Funding Request). No medical professionals are involved, only Civil Servants with absolutely no medical training, only a ministerial brief to restrict access as much as possible. One of these untrained "Civil Servants" told my oncologist (a world renowned prostate cancer specialist) that the "data" did not support his case (even though NICE have changed their mind). I am at a total loss for words .......


 


PS - just to clarify, approx. 95% of all IFRs are turned down http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-frown.gif

Edited by member 13 Jan 2015 at 22:17  | Reason: Not specified

Nil desperandum
Allister
User
Posted 30 Jan 2015 at 18:17

PSA same after 3 weeks on enz, but i broke my leg as i had a hot spot in my femur , spent 2 weeks in hospita they sent me home now , have appointment on 9th of feb with my oncologist , with new bone scan results , so i hope then we have a better idea on how its doing 

User
Posted 30 Jan 2015 at 20:54

I'm sorry to hear about the broken leg Ahmed. When I was prescribed Enzo I was told that after 4 weeks the PSA might not have gone down or could even rise, so don't be too concerned by it staying stable. Fingers crossed for you that it's down in four weeks time.

I've just completed my first four weeks. Bloods after two weeks showed Enzo wasn't damaging my liver. PSA after four weeks has gone from 13.45 to 6.41 so hopefully the "magic beans" are doing their job. Side effects of Enzo are nil for me. In fact, hot flushes seem slightly better and I'm almost pee'ing like a teenager again. :-)

Four more weeks prescribed, followed by appointment with nurse to pick up four more weeks, followed by an appointment with Onco.

User
Posted 31 Jan 2015 at 10:09

Good to see different updates on this. My husband has next appointment on 4th Feb, he's been on the magic beans for 8 months. Been for his bloods for the appointment so now a nervous waiting game until 4th. Hoping to get a good result again keeping the PSA nice and low.


 


Glen

User
Posted 31 Jan 2015 at 14:12

hi


thanks for the kind words 


i have been told it could take 3 months for enzo to start working , i do get hot flushes and fatigue which differs from day to day 

User
Posted 05 Feb 2015 at 09:08

My hubby's latest results after appointment with Oncologist. PSA down to 0.01, the Oncologist has said he won't get a lower reading from this, it will just say<0.01. This is the lowest reading and PSA has continued to fall. Haemoglobin steady at 10.5. My OH is "cock-a-hoop"! First diagnosis with a PSA of 117 was in September 2012. We're still fell walking, albeit at a slower pace and maybe not so many mountains!


Here's hoping magic beans continue to contain the PCa.


All the best.


 


Glen

User
Posted 05 Feb 2015 at 12:44
Fabulous news Glen long may that continue
Xx
Mandy Mo
User
Posted 09 Feb 2015 at 14:41

good news 


hope the beans keep working 


Ahmad

User
Posted 09 Feb 2015 at 14:54

This really is great news Glen, long may it continue 


Si

Don't deny the diagnosis; try to defy the verdict
User
Posted 09 Feb 2015 at 16:38

saw oncologist today , 2 more mets , 1 in bottom of spine and 1 in ribs , no spa as he thinks it will be high after i broke my leg , he has ordered RT where the break took place , and he has put me on zometa to strengthen the bones , but he thinks 3 months on enzo is a better indication as you could get a flair from starting it 


Ahmad

User
Posted 19 Feb 2015 at 21:18
Hello

I joined the Enzo users 3 days ago as part of the Stampede Group J so am also taking Abiraterone plus Opeprazole and Prednisolone. This is on top of the normal HT therapy.
I think the idea is to hit the cancer with everything early on

I was diagnosed in late December 2014 with a PSA of 214 and spread to left hip bone.
I started the HT in early January and by mid February PSA had dropped to 40.

It will be interesting to see how my next results (in 2 weeks) will be after 2 weeks of the enzo/Abby cocktail will be.

I'm a little apprehensive about the side effects though but so far am only rattling with all the pills

I share everyone's hope that this drug does what it says on the label

Paul
User
Posted 22 Feb 2015 at 09:25

Hi Paul


It will be very interesting to see how your treatment progresses, many thanks for posting on this.


Hope it all goes well for you. My OH is purely on Enzalutamide and I will keep posting regular updates as we get results.


Glen


 

User
Posted 26 Feb 2015 at 15:11

I've now completed eight weeks on Enzo. PSA at week 4 was 6.41 and is now 6.77. I asked the Onco about the slight rise. Her reply, "I'm so not worried by that". That will do for me.


Four more weeks prescribed followed by an appointment with Onco.

User
Posted 03 Mar 2015 at 08:32
It's really good to read this, our oncologist said they prefer Enzo to abby tabs as the side effects they see are much lower. This helps us make our decision about whether to go for chemo first when the time comes (it's coming in the next three months or so). Thanks for the updates.

All the best
Allison
User
Posted 26 Mar 2015 at 18:37

Twelve weeks on Enzo and counting. PSA at week 8 was 6.77 and is now 6.46.

Since the PSA is stable they are going to deliver the Enzo to me at home every four weeks rather than make me go to the hospital to pick it up. Wow! This is private patient treatment from the NHS. I didn't ask for this, it was offered at today's appointment.

Bloods will still be done every four weeks. Next appointment with Onco is in eight weeks time.

User
Posted 28 Mar 2015 at 19:16

My husband's next appointment is 1st April, will post update then. He had bloods done yesterday.


Glen

 
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