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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.
User
Posted 02 Nov 2019 at 09:08

I am sorry to hear your news.

I too have been in your situation many times when a treatmrent no longer works and you need to move on to to the next treatment.

I was particularly annoyed when Abiraterone stopped working for me, as it proved such an easy ride.

Although I have not been on the Cabazitaxel bus yet, it certainly looks like being one that I will likely need to travel in the future. When, I do not know

So as long as there are treatment path options available, that is good.

Very best wishes

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 03 Nov 2019 at 11:04

Hi, 

Sorry to hear the news that the trial is not being offered now, not nice to get hopes built up just to be shattered.

I too have been put through for trials, if the professor in charge agrees. It will be enzalutamide along with talazoparib, which is used for metastic breast cancer, or a placebo. 

Hope your OH gets something soon. 

Sandy

User
Posted 03 Nov 2019 at 22:02
Hi,

Sorry to read about the treatment and trials not going as they should. Likewise I was on enzo for a while which didn’t work and now on cabataxal. I found it heavier going with SE than the docataxal. I have fingers crossed that this does slow things down but you really never know how it’s going the work out. I must ask about 5he Tition 3 trials. Iam trying to get on the Neptune trials.

Wish you and OH all th3 best.

Steven

User
Posted 11 Nov 2019 at 21:57
Hi saunders

My OH has been on Enzolutamide since last November and although now it is no longer holding down the PSA it has worked well with minimal side effects. He is also on Zoladex. I think it can work well for several years for some people so hope that includes you.

Best wishes

User
Posted 29 Nov 2019 at 07:40
Hi Saunders

It depends which doctor. PSA has been going up for months now. Scans had been stable until last ones CT and bone scan showed just one new area BUT then had SPEC CT scan not had before which showed 4 new areas of concern. One doctor said Enzo still working mostly but Wednesday different doctor just said no more, I would say less effective. Best wishes for yours and hope it works for years for you.

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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

User
Posted 01 Nov 2019 at 21:21
Told that my husband doesn't meet criteria for Triton 3 so Carbazitaxel is only option. We told doctor how devastated we both felt with being offered trials and then not even having the tests to see if my OH qualifies. Have been told we can have a week to see if they can come up with any trials that my OH would be eligible for. We don't want to start Carbazitazel if there are other options as we were told that is the last treatment on NHS and unlikely to work for any length of time after the Chemo finishes.As OH is so well we asked about delaying treatment but told that not an option as PSA rising fast.
User
Posted 02 Nov 2019 at 09:08

I am sorry to hear your news.

I too have been in your situation many times when a treatmrent no longer works and you need to move on to to the next treatment.

I was particularly annoyed when Abiraterone stopped working for me, as it proved such an easy ride.

Although I have not been on the Cabazitaxel bus yet, it certainly looks like being one that I will likely need to travel in the future. When, I do not know

So as long as there are treatment path options available, that is good.

Very best wishes

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 03 Nov 2019 at 11:04

Hi, 

Sorry to hear the news that the trial is not being offered now, not nice to get hopes built up just to be shattered.

I too have been put through for trials, if the professor in charge agrees. It will be enzalutamide along with talazoparib, which is used for metastic breast cancer, or a placebo. 

Hope your OH gets something soon. 

Sandy

User
Posted 03 Nov 2019 at 22:02
Hi,

Sorry to read about the treatment and trials not going as they should. Likewise I was on enzo for a while which didn’t work and now on cabataxal. I found it heavier going with SE than the docataxal. I have fingers crossed that this does slow things down but you really never know how it’s going the work out. I must ask about 5he Tition 3 trials. Iam trying to get on the Neptune trials.

Wish you and OH all th3 best.

Steven

User
Posted 10 Nov 2019 at 08:15
Thank you for replies. I had just felt devastated after 2 trials were withdrawn. Further phone call from hospital explained can't do Triton 3 as my husband has had both Abi and Enza but this still might be possible later after a different treatment. There are no suitable phase 3 trials but they will refer to the phase 1 trials team and in the meantime he stays on Enza. PSA had only gone up from 14 to 18 in 2 weeks so they think Enza still having some effect.
User
Posted 10 Nov 2019 at 09:50

Hi, 

It's not a nice feeling thinking your going on a trial only for it to be withdrawn. I was put through for a Talazoparib trial only to be told that because I had Zoladex prior to chemo I couldn't be put forward to it.

Started Enzalutamide, 160mg per day, on Friday. Been told that it has a good effect on PCa and may keep working for a few years.

Zoladex to continue, even though it is starting to lose its potency, along with Enzalutamide, 

Interested in others experiences with Enzalutamide. Keep the faith, hopefully it works out for your OH

Cheers

User
Posted 11 Nov 2019 at 21:57
Hi saunders

My OH has been on Enzolutamide since last November and although now it is no longer holding down the PSA it has worked well with minimal side effects. He is also on Zoladex. I think it can work well for several years for some people so hope that includes you.

Best wishes

User
Posted 15 Nov 2019 at 14:40

Stay strong.  We've been in a terrible funk and both said we need to snap out and be thankful there is something, anything offered.  Watching your spouse go through this is hell, and not being able to do anything sucks too.  We started alternative options in June with juicing through a video we watch on chrisbeatcancer.com.  We don't see it as a miracle cure, but we feel the nutrients and anti cancer foods we are pumping into him is keeping his health otherwise very good (to keep him eligible for trials).  He still works, exercises, we just took an 11 day holiday in Europe, etc.  Thinking of you both!

 

User
Posted 28 Nov 2019 at 23:14
This is now the end of Enzalutamide. Not sure what will happen next. Had been told they would keep him on Enza while looking at trials. Saw a doctor yesterday who said no more Enza and as far as he was concerned it was a "no brainer" my husband should go onto Cabazitaxel and not consider trials. The previous doctors we had seen had all suggested we explore all possible trials and keep Cabazitaxil as the last resort. We have been told that is the last standard treatment. As my husband is well we want to delay Chemo as long as possible as we have been warned that most men have to stop before 10 treatments as not well enough to continue. We are going to talk to the trials unit tomorrow and see what they say.
User
Posted 29 Nov 2019 at 06:06

Hi

I've just started my enzalutamide journey, I meet with oncologist next week to see how it is working. 

I hope you and your OH get the treatment you require. Just  being nosy here but has the enzalutamide stopped working or being less effective.

Sanders

User
Posted 29 Nov 2019 at 07:40
Hi Saunders

It depends which doctor. PSA has been going up for months now. Scans had been stable until last ones CT and bone scan showed just one new area BUT then had SPEC CT scan not had before which showed 4 new areas of concern. One doctor said Enzo still working mostly but Wednesday different doctor just said no more, I would say less effective. Best wishes for yours and hope it works for years for you.

User
Posted 11 Dec 2019 at 20:49
We are looking at a trial Cellcentric early stage CCS 1477 01

Should find out soon if he is suitable. They wanted to do another biopsy but the CT scan done today can't identify any lymph nodes with cancer so told only possible biopsy would be a bone one and don't advise so see what they say tomorrow. The previous trial they were monitoring one lymph node for the trial. I think it was 1.7 cm and if it has now gone (or nearly) that must be good news. Had long chat with the consultant radiographer who was supposed to do the biopsy who said she would have been doing the measuring as that was her job. We both felt that was positive now to find a way to treat the bones. Hopefully someone is working on that! As my husband is still feeling fit and healthy we intend to enjoy Christmas and then face whatever the New Year brings.

User
Posted 12 Dec 2019 at 09:22

Hi

Looks like some good news in there for you both. Hopefully you'll both get the right treatment going forward.

As you know I started enzalutamide, had my first meeting with oncologist last Friday and surprised to find the PSA down from 5.4 to 1.6 in only 4 weeks. 

Anyway have a great Xmas and all the best for the new year. 

Sandy

User
Posted 11 Jan 2020 at 07:36

Thank you all for your comments, I’m hoping to start on Enzalutamide if funding agreed, as PSA shot up last year, 3.9- 8.8- 17.9- 21.4- 80.8
I was looking to see how people coped with It.

Chris

ps, 14 years since surgery, and just booked holiday for 2021!

Edited by member 11 Jan 2020 at 08:12  | Reason: Minor correction to numbers

User
Posted 16 Jan 2020 at 14:44
I've just started on enzalutamide with a PSA of 1,2. Going back to the hospital in two weeks for a check-up. Hope everything goes well.
 
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