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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

 

 

 
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