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Starting Enzalutamide

User
Posted 16 Jun 2018 at 11:49

I don't often post on here but would like to hear other people's experiences of Enzalutamide.  Started off with PSA of 1631.5 in March 2016 when first diagnosed, after starting Zoladex injections and 6 sessions of Docetaxel PSA down to 0.5 in March 2017.  By January 2018 it had gone up to 5.7 so prescribed Bicalutamide.  This had no effect and PSA up to 16 when I saw the Consultant Oncologist yesterday.  I am now to start Enzalutamide and having been extremely lucky up to now with no unpleasant side effects,, even from the chemo (apart from the hair loss of course), and having felt well throughout, would be grateful to hear others experiences of Enzalutamide and how they have coped?  Another step on the journey.  


 


Chris B 

User
Posted 16 Jun 2018 at 11:49

I don't often post on here but would like to hear other people's experiences of Enzalutamide.  Started off with PSA of 1631.5 in March 2016 when first diagnosed, after starting Zoladex injections and 6 sessions of Docetaxel PSA down to 0.5 in March 2017.  By January 2018 it had gone up to 5.7 so prescribed Bicalutamide.  This had no effect and PSA up to 16 when I saw the Consultant Oncologist yesterday.  I am now to start Enzalutamide and having been extremely lucky up to now with no unpleasant side effects,, even from the chemo (apart from the hair loss of course), and having felt well throughout, would be grateful to hear others experiences of Enzalutamide and how they have coped?  Another step on the journey.  


 


Chris B 

User
Posted 17 Jun 2018 at 00:13

I can't comment from personal experience on Enzo, because I took the Abiraterone route, but looking at Norman's post, it seems to be exactly the same as Abi.


Abi consisted of 4 chalky tablets to be taken each morning, but as with Norman, I had no significant side effects. My Abi worked for 10 months, so my results were very similar to Norman's.


Glad to hear your PSA dropped so dramatically. Lets hope that the Enzo keeps it under control for you.

User
Posted 17 Jun 2018 at 07:44

Dennis started Myoclonic Seizures at the time he started Enzalutamid, so stopped & started 3 times!!!! I did everything to try & establish if this was the cause & as they stopped when it has worn out his system then we were happy. so after a 18 month gap he has had 3 more attacks we maybe back to square one Etc. His PSA is climbing rapidly! I wish u all the best & hope someone else responds to your post who may be able to throw some light in the subject. 

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User
Posted 16 Jun 2018 at 22:02

Hi,


Great to see your PSA drop dramatically. I had Enzalutimide for eight months before it stopped working but can say, for me anyway, it was a walk in the park compared with Docetaxel. 


Apart from the usual tiredness that all the treatment options for us seem to have, it seems to be much kinder on the body. The big one for me is that it is 4 (rather large) capsules per day, so no needles! No hair loss, no horrible taste in the mouth. So side effects are minimal. 


As I said, I only had eight months on it but it did help having a lot more normal life, although the bar as to what constitutes "normal" is much lower now!  It is a treatment option which was hard fought for, and I think it is one of the most expensive main stream treatments finally approved by NICE.


So embrace it and I hope you do well on it.


 


Best regards

User
Posted 17 Jun 2018 at 00:13

I can't comment from personal experience on Enzo, because I took the Abiraterone route, but looking at Norman's post, it seems to be exactly the same as Abi.


Abi consisted of 4 chalky tablets to be taken each morning, but as with Norman, I had no significant side effects. My Abi worked for 10 months, so my results were very similar to Norman's.


Glad to hear your PSA dropped so dramatically. Lets hope that the Enzo keeps it under control for you.

User
Posted 17 Jun 2018 at 07:44

Dennis started Myoclonic Seizures at the time he started Enzalutamid, so stopped & started 3 times!!!! I did everything to try & establish if this was the cause & as they stopped when it has worn out his system then we were happy. so after a 18 month gap he has had 3 more attacks we maybe back to square one Etc. His PSA is climbing rapidly! I wish u all the best & hope someone else responds to your post who may be able to throw some light in the subject. 

User
Posted 17 Jun 2018 at 12:13

Thanks for your encouraging reply - hopefully my PSA will respond again and I too will get by with minimal side effects.  You are a little further down the road than me I think and I wish you all the best.  

User
Posted 17 Jun 2018 at 14:07
It is difficult sometimes to isolate different side effects and the cumulative effects of treatments also complicate. I have been on enzalutimide for just over a year andvapart from additional fatigue that has become more marked over time anyway (six and a half years in with bone metastases) I seem not to have had any others. It has eased bone pain too. I was diagnosed before chemo first was the protocol so that still to come. See my profile for more details. Good luck.
User
Posted 18 Jun 2018 at 11:53

Thanks Yorkhull - I will be very happy if the Enzolutamide works for me for 12 months!  One day at a time . . .

User
Posted 19 Jun 2018 at 19:17
Hi Chris,
Like you I’ve had the chemo which brought everything well down. I started to get a rise in PSA so they put me on Bicalutamide as well but that didn’t work. Have now been on enzo for 8 months and although PSA is still rising the scans on bones are steady which is the main thing. I haven’t had any side effects on these tablets, maybe a bit tired during the day but with two young children, who wouldn’t be! I still try to do a fair bit of exercise like walking and wee bit of jogging.
Hope it all goes well

Steven
User
Posted 20 Jun 2018 at 01:48
Hi Chris
I hope everything goes well with you with the enzalutamide.
I started enzalutamide plus prostap in January 2015 after dx in December 2014. It was part of a Stampede trial
My psa at start was 235 and I had a minor spread to hip and lung.
Rest of the detail is on my profile.

My psa came down within a few months to .05 and has remained there till Jan 2018 (my last test)
So I'm still taking the 4 torpedoes and having my HT jabs.
My next blood test is due July and hopefully everything will still be ok.

As far as side effects I guess I've had the usual hot sweats, tiredness etc.
Just lately though the muscle wastage seems to be making me susceptible to muscle strain and faster onset of arthritis.
I'm finding this really saddening as I'm struggling now to walk apace let alone jog or run.
Maybe my onco will come up with something.

All my best to you and I hope the enzalutamide works for you too.

Paul
User
Posted 21 Jun 2018 at 16:23

Thanks Steven - really helpful to get all these positive responses re. Enzo side effects.  Hopefully it will work as effectively for me for however long.  Impressed with the jogging!


Best wishes


 

User
Posted 21 Jun 2018 at 16:30

Thanks Paul - again, really appreciate you taking the time to reply with your positive experiences of Enzo.  Hope the July blood test goes well.


 


Best wishes


 


Chris

User
Posted 19 Jul 2018 at 11:39

Hi well my story is told I had prostate cancer in 2015 had scans which showed just prostate but glesson of 9 and psa 12 had hormone implants followed by 20 rounds of radiation treatment then early 2017 told now spread to lungs was offered chemo or enzo my psa still at 12 so took the enzo 4 tablets a day as for side effects just got very hot at different times of day but that's all , Then at new year 2018 scan on lungs showed no change and psa down to .7  Christes well pleased with this and so was I , but was sort lived as 3 months later psa back to 12 then month later up to 25 Christes did new scan and told me now spread to bones in my ribs and enzo to be stopped and given steroid treatment , Then last week gave me ultimatum  chemo now or will not be fit to have if left much longer I never wanted chemo not sure if down side worth what little gain in time worth it but I'm left with no choice it seems. So to sum up enzo on the face of it may have given an extra 12 months or so   

User
Posted 25 Jul 2018 at 15:39

Hello Ron51 - thank you for your response - encouraging to hear Enzo may have given you another 12 months but sorry to hear you are now faced with such a difficult decision.  My OH and I have always thought life is quality over quantity but who knows whether we will feel the same when we are in the same situation.  I have been taking the Enzo for just over 2 weeks now and so far so good, perhaps a few more hot flushes but in this weather think the whole population is suffering!  I see my Specialist Oncology Nurse in just over a week so will see then whether my PSA has responded.


Best wishes.


 

User
Posted 29 Jul 2018 at 00:52
Hi Chris
Just a quick update on my Enzalutamide experiences.

By the way I hope your next consultation goes well.

I mentioned in my last post that I thought that the enzo was wasting my muscles resulting in severe muscle pains.
Well after seeing my GP and a rheumatologist I have been diagnosed with Polymyalgia and prescribed steroids which I've been taking now for one week. They have certainly made a big difference.
Just before my rheumatologist appointment I had my 6 monthly consultation with my onco.
My blood results were ok and psa still down at .05.
She did not believe that the enzo was the cause of the muscle spasms but just to be sure she said to stop taking the tabs for 4 weeks and then decide whether or not to carry on.
I think I will continue with the enzo seeing as it's keeping things under control.
My quality of life is still good.

I hope that you have the same success with this drug.
Please let us know how you get on.

Paul
User
Posted 05 Aug 2018 at 15:34

Hi Paul - good to hear from you again and, although sorry to hear you have been diagnosed with polymyalgia (as if you didn't have enough to put up with!), pleased the steroids are helping with the muscle pain.  Long may it last.


 


I am now coming to the end of my fourth week on enzo and so far so good - no apparent side effects apart from a few increased hot flushes but I think these are more due to the current weather than the hormones.  I see my Specialist Nurse tomorrow when the million dollar question will be if the drug is working.  She did say on my first visit that my PSA may go down immediately or go up and then down - hopefully it will be the former.  Will let you know how I get on.


 


Best wishes - Chris

User
Posted 05 Aug 2018 at 22:16
hi chris
Just wondering if you are taking steroids with your enzo as i am starting my enzo trip tomorrow and i was told i would take them with preds ...
many thanks kevo..
User
Posted 09 Aug 2018 at 15:00

Hi Kevo - no, not taking steroids, just the usual 12 weekly Zoladex injections.


Saw the Specialist Nurse on Monday - PSA now 23 (20 four weeks ago) which she said was a good sign as it appeared to be stabilising and the Enzo was working, they would not expect to see a drop until after 3rd or 4th cycle.  BP was fine too as were bloods so we left clutching the next 4 weeks of Enzo feeling quite relieved.  Still no significant side effects so a real bonus.


Best wishes - Chris


 


 

User
Posted 28 Dec 2018 at 08:35
Hi Chris
I came across your profile because I was looking for info and experiences of Enzalutamide. My husband has just been prescribed it as his PSA has continued to rise sine Docetaxel ended in the summer. See profile.
I hope you are still doing ok on it. My husband is only a week in so now side effects so far.
Thanks for posting though. Each new step on the journey can be scary. I’ve been really anxious lately as we were told in June that we were referred back to Urology from oncology. They said it could be a long time before they saw us again. No such luck unfortunately!
Best wishes, Susie
User
Posted 28 Dec 2018 at 10:50

Hi Susie - ironically just had the most recent appointment with Oncologist on Xmas Eve (!).  Recent bone scan and CT scan show the bone mets are stirring again - we always knew this would happen eventually and I have been very lucky so far, continuing to feel really well, no bone pain.  PSA has been going up slowly during the five and a half months I have been on Enzalutamide but it was holding things fairly steady - now at 40.  So, Enzalutamide now stopped as it was not working for me (also saving the NHS a vast amount of money), and I am now to have 10 sessions x 3 weeks of docetaxel again which will take us to around September, seems like a long, tedious slog at the moment but we will get through it session by session - I was fortunate in that I had no ill-effects from docetaxel last time (unlike your husband who sounds as though he had a grim experience of it) apart from the inevitable hair loss and a couple of raised temperatures.  


During the time I was taking the Enzalutamide I generally felt well though - hot flushes were stronger but nothing I couldn't live with, and I did a lot of yawning towards the end of the day - a short afternoon nap is helpful if you can fit it in.  Hopefully the Enza will work well for your husband - everyone seems to react so differently.  Like you, my wife finds the continuing uncertainty and stress difficult to live with but we try to make the most of each day as I expect you do too.  Let me know how you both get on.


Best wishes - Chris


 

User
Posted 28 Dec 2018 at 11:29
Thanks so much for your reply Chris. It is good to hear you did well on Enzalutamide even though only for a few months. Was your Gleason grade high too? I dread my husband going back to chemo, he had a bad time. But we will face that when we have to. Fingers crossed for you. I hope you manage it as well this time. I’ll keep in touch and let you know how we do. Hope your 2019 goes well.
Regards Susie.
User
Posted 29 Dec 2018 at 23:42
Hi Chris, looks like your in same pathway as myself and can’t belive it’s six months since last post. Likewise enzo worked for a while but PSA continued to rise. Did wonder when further action would be taken and it did after PSA rose to over 140 and mets spread. Just finished 7/10 of chemo and found it wee bit harder than last time with tiredness around session 5 but I continue to work and enjoy myself. Good luck with your sessions and hope it goes well!
Steven
User
Posted 30 Dec 2018 at 16:09

Hi Steven - good to hear from you again but sorry you too are back on chemo - assuming you are on docetaxel again? Pleased you are coping well and your PSA is going down (mine was 40 on Xmas Eve) - certainly I had an easy time of it when I had my first chemo nearly two and a half years ago now - hoping for the same experience this time but prepared for it to be harder, particularly the extra sessions.  At least I am retired (just about to turn 72) so can have the odd nap  - must be difficult for you working plus the added infection risk.  Have to say our hearts sank somewhat at our Xmas Eve news - dust off the thermometer, blood tests and prepare for hair loss again, plus the sheer tedium of the whole thing - but will just have to take one session at a time and make the most of our time in between doing as much as we can.  I still feel really well, no bone pain, which is the most important thing.


All the best to you and your family for 2019 - keep in touch and let me know how you get on.


Best wishes - Chris


 

User
Posted 30 Dec 2018 at 23:11
Hi chris,
Yes it is strange dusting off the old equipment again. I found I was a bit more relaxed about it this time, but not sure that’s a good thing?
All the best for 2019
Steven
 
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