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Journey with Enzalutamide

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User
Posted 26 Jan 2019 at 19:25

My husband was diagnosed almost 2 years ago PSA 1303 extensive bone mets and in lymph nodes. Started HT and then early Chemo. That worked until Chemo finished PSA down to 1.1 but started to rise straight afterwards doubling in about 4 weeks. Then went on a trial with Abiraterone (and a trial drug or placebo) Was working well for 4 months and then had severe toxic liver (ALT went up to over a thousand) so had to come off trial.


Started Enzalutamide end of Nov 2018. This was only an option as the Abi had been part of a trial and not paid for by NHS, also my husband was responding well to the drug as shown by PSA and scans and it was a toxic drug reaction that he had to come off it. In the first 3 weeks PSA down from 11 to 3.1. This is lower than with 4 months of Abi. Should find out last PSA soon. Doesn't seem to have any real noticeable side effects. Well when asked about fatigue and tiredness my husband said yes sometimes. I suggested he put it in context when he had walked over 10 miles in a day he felt tired the next day, I didn't think that was fatigue due to the drug, Four or five miles was fine in a day. He has now been given pills for 2 months but to have a blood test in 4 weeks which they will phone him with the results. Also he has a CT scan booked which we understand was asked for by the trials team which we think may tell us a bit more. This will be well over 2 months into the drug. I think 2 months is about the longest we've been between appointments for a long time.


How long this for we don't know but it seems our best hope for now and hopefully a long time.

User
Posted 26 Jan 2019 at 19:25

My husband was diagnosed almost 2 years ago PSA 1303 extensive bone mets and in lymph nodes. Started HT and then early Chemo. That worked until Chemo finished PSA down to 1.1 but started to rise straight afterwards doubling in about 4 weeks. Then went on a trial with Abiraterone (and a trial drug or placebo) Was working well for 4 months and then had severe toxic liver (ALT went up to over a thousand) so had to come off trial.


Started Enzalutamide end of Nov 2018. This was only an option as the Abi had been part of a trial and not paid for by NHS, also my husband was responding well to the drug as shown by PSA and scans and it was a toxic drug reaction that he had to come off it. In the first 3 weeks PSA down from 11 to 3.1. This is lower than with 4 months of Abi. Should find out last PSA soon. Doesn't seem to have any real noticeable side effects. Well when asked about fatigue and tiredness my husband said yes sometimes. I suggested he put it in context when he had walked over 10 miles in a day he felt tired the next day, I didn't think that was fatigue due to the drug, Four or five miles was fine in a day. He has now been given pills for 2 months but to have a blood test in 4 weeks which they will phone him with the results. Also he has a CT scan booked which we understand was asked for by the trials team which we think may tell us a bit more. This will be well over 2 months into the drug. I think 2 months is about the longest we've been between appointments for a long time.


How long this for we don't know but it seems our best hope for now and hopefully a long time.

User
Posted 27 Jan 2019 at 09:45

By the way , you dont need a question to post , sometimes its good to write stuff down and share with people who understand.


Phil

User
Posted 30 Mar 2019 at 21:15
Thanks for all the replies.

Healey - Amazing 51 months - I do hope it keeps working for you as well as for my husband. 4 months had been the longest anything worked for but hopefully this will continue.
User
Posted 31 Mar 2019 at 20:55
Great news Paul ,I read your posts as Gary is on the trial with Enzo and Abi .
He’s doing fine but as with you his muscles are weaker
,he’s still working but at a slower pace .
PSA still 0.01 with onco apps every 8 weeks .
He’s on a high today as he’s been to Wembley with Pompey winning !!
Best wishes to all
Debby
User
Posted 19 Apr 2019 at 16:28

Hi,


Enzo seems to work for me too. I have been on it for 24 months now - my PSA is currently less than 0.04 (initially 119 in 2013). I also have Decapeptyl injections every 6 months.


Like others I get incredibly fatigued but I cope.


Hope your situation improves.


 


Alan

User
Posted 18 Jul 2019 at 08:01
Well PSA now 6.6.(2.6 then 3.8 and now 6.6). A steeper rise than before (but nothing like his starting PSA of well over a thousand). Letter just reiterated what we had been told that they will do scans again and as long as they are stable the Enzo will continue.

Devonmaid - I feel so much for you as it must be so hard to cope when John is in so much pain. Just hope they can come up with something. Love to you.
User
Posted 03 Oct 2019 at 18:14
It took awhile to get the scans and he got another 4 weeks of pills while we waited for scans. The CT scan showed everything as stable but the bone scan showed up a new area in the right sacralalar. They are suggesting a trial TRAP which would keep him on the pills and try RT - SBRT to the new area this would hopefully reduce PSA. He is so well it's great to have another 2 months supply . We go back in 2 weeks to talk about the trial. They need to check he is suitable and he needs to agree. I'm sure we will have questions but it seems ideal.
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User
Posted 27 Jan 2019 at 08:17

Not sure what the question is but i was on Enza for a year and daily tiredness, severe fatigue always kicked in at around 3pm.

Ten. YES BLOODY 10 years since DX!!


I am Spartacus - with the strength of iron, a will of steel and the fight to give this disease a real run for its money!! 

User
Posted 27 Jan 2019 at 09:37

Best of luck with the Enzalutamide, hope it keeps working for OH.Thanks for the update.


Keep up the walking , i’m sure its good for the mind as well as the body.


Phil


 


 


 

User
Posted 27 Jan 2019 at 09:45

By the way , you dont need a question to post , sometimes its good to write stuff down and share with people who understand.


Phil

User
Posted 27 Jan 2019 at 10:12

I’m interested in how your man is doing too as mine has just started on Enza, so far not great but only less than a week so not sure what to expect. John got liver toxicity with bicalutimide so is being watched closely though I'm told abi is worse for that hence choosing enza. 


Will ne watchign out for updates, good luck


love Devonmaid xx

User
Posted 30 Mar 2019 at 09:56
Just am update. All seems to be going well. PSA seems to have stabilised at around 2.6. Having CT scans from leaving the trial (every 3 months) is showing things are stable. Next appointment 2 months and not even blood tests in-between. Still walking quite a bit 4 or 5 miles most days and not complaining the following day.
User
Posted 30 Mar 2019 at 16:12

Glad to hear things are going well and things are stable.

Ido4

User
Posted 30 Mar 2019 at 18:05
Hello
I have been on enzalutamide now for 51 months.
I too started with abiraterone as well as enzalutamide plus the Prostap.
The abiraterone gave me terrible stomach and my ALT started sky rocketing so I came off it after about 2 months.
I've had no other medication than the enzalutamide and Prostap.
My psa started at 235 and dropped quickly to .05 where it has remained ever since and is where I am today.
Side effects is the usual and is handleable
I used to run but now hike/walk 3-8 miles twice a week.
Yes I get a bit more fatigued but such is my new life

I hope this helps a bit

Paul
User
Posted 30 Mar 2019 at 18:37
Hey Paul (Healey) you haven't updated your profile for 8 months.
Can you do it at some point, it gives us all hope.

Thanks

John
User
Posted 30 Mar 2019 at 21:15
Thanks for all the replies.

Healey - Amazing 51 months - I do hope it keeps working for you as well as for my husband. 4 months had been the longest anything worked for but hopefully this will continue.
User
Posted 31 Mar 2019 at 17:07

Hi Jasper


thanks for your reminder, Ive now updated it.


Its nice to know somebody reads my story


Paul

User
Posted 31 Mar 2019 at 20:55
Great news Paul ,I read your posts as Gary is on the trial with Enzo and Abi .
He’s doing fine but as with you his muscles are weaker
,he’s still working but at a slower pace .
PSA still 0.01 with onco apps every 8 weeks .
He’s on a high today as he’s been to Wembley with Pompey winning !!
Best wishes to all
Debby
User
Posted 01 Apr 2019 at 19:48

Great to read this thread. John’s PSA dropped from 99 to 12 on Enza in two months and he is doing pretty well. He is still on his morphine patches and still havign breakthrough pain and his bloods (red and white cells) continue to drop (not good) but ALP and LDH have also dropped (great). We are happy.


Good luck all


Devonmaid

User
Posted 19 Apr 2019 at 16:28

Hi,


Enzo seems to work for me too. I have been on it for 24 months now - my PSA is currently less than 0.04 (initially 119 in 2013). I also have Decapeptyl injections every 6 months.


Like others I get incredibly fatigued but I cope.


Hope your situation improves.


 


Alan

User
Posted 10 Jul 2019 at 21:25
An update.

Just been given pills for another 2 months. but PSA last time had started rising from 2.6 to 3.8. As he had scans as a follow up from trial and they showed things being stable we continue for now. Won't find out PSA for a week or two but consultant thinks it is likely to have risen again. Still well in himself and able to do occasional 10 mile walks without feeling too bad the next day.
User
Posted 12 Jul 2019 at 09:57

Hi


sorry to hear about the PSA rise, glad the consultant has kept you in it though. John was given a months supply last time as his PSA and symptoms are (probably) showing that this treatment has failed. He started in January. He has great pain from the worst tumour site and we are having a lot of help from our local hospice thankfully. We see the oncologist on 22nd for scan results. I suspect we won’t get a new prescription, but am grateful for it all the same.


love Devonmaid 

User
Posted 18 Jul 2019 at 08:01
Well PSA now 6.6.(2.6 then 3.8 and now 6.6). A steeper rise than before (but nothing like his starting PSA of well over a thousand). Letter just reiterated what we had been told that they will do scans again and as long as they are stable the Enzo will continue.

Devonmaid - I feel so much for you as it must be so hard to cope when John is in so much pain. Just hope they can come up with something. Love to you.
User
Posted 18 Jul 2019 at 11:24

It’s good they are continuing with the enzalutamide and using scans rather than PSA to decide. Sending you both my best wishes.

Ido4

User
Posted 18 Jul 2019 at 21:36
It is good that the enzalutamide medication is continuing. I hope the scans show stability.
My Onco considers how I'm feeling as being the best measure before changing anything.
My best wishes to you both.
Paul
User
Posted 03 Oct 2019 at 18:14
It took awhile to get the scans and he got another 4 weeks of pills while we waited for scans. The CT scan showed everything as stable but the bone scan showed up a new area in the right sacralalar. They are suggesting a trial TRAP which would keep him on the pills and try RT - SBRT to the new area this would hopefully reduce PSA. He is so well it's great to have another 2 months supply . We go back in 2 weeks to talk about the trial. They need to check he is suitable and he needs to agree. I'm sure we will have questions but it seems ideal.
User
Posted 14 Oct 2019 at 21:40
Doctor phoned last Thursday to say they wanted another scan and expect another phone call. They phoned Friday for a scan today.
they wanted a SPECT CT scan. They explained it to us as a bone scan and then a CT scan giving them 3D images. Sounds amazing but not something we had heard of. The images were sent through to the doctor while my husband was still there to agree they were clear images. PSA 2 weeks ago was 14 - still going up at about the same rate. We go back to talk about the trial on Wednesday.
User
Posted 16 Oct 2019 at 20:55
Totally devastated. Scans show at least 4 new areas of cancer so not suitable for trial. They want to stop Enzalutamide fairly soon. There is a possible trial TRITON3 but only about 25% suitable so we will talk about it otherwise it's Carbazitaxel but that seems about it.
User
Posted 16 Oct 2019 at 21:33
So sorry to see this, obviously not the sustained response what you were hoping for.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
 
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