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Enzo or Abi - any views?

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User
Posted 03 Jan 2017 at 15:26

Hi All

Not sure if new year greetings are in order given the tough time that so many of you are going through but since the sun is shining and my OH has just had his final chemo session (for now) I'll give it a go. So Happy New Year to you all, and thanks for your excellent advice and amazing support - which I'm about to ask for once again.

My OH has mets in the spine, pelvis, thighs, shoulders and upper arms plus in the lymph nodes. Considering all that he's doing remarkably well but the chemo hasn't been as effective as we'd hoped; PSA came down from 470 to 42 but then shot up to 90, down to 52 and started to rise again through 70.4 to 80 where we are currently at. So he's having another MRI and CT scan to see what's what and then the onco will discuss either Enzo or Abi as the next course of treatment. The general prognosis is rubbish but if we could have a chance of a relatively good summer that would be such a blessing...

Any views either way? The onco seems to feel that both options are about equal re effectiveness and likely side-effects but it would be good to hear from the real experts.

Thanks all.

Eleanor

User
Posted 03 Jan 2017 at 17:07

Eleanor,

I'm biased because I think Enzo did well by me. I do know that my Onco preferred Enzo to Abi when she recommended the Enzo route. One other advantage of Enzo is you don't have to take steroids with them which you do have to do with Abi.

David

User
Posted 04 Jan 2017 at 18:55
Hi Eleanor,

I suppose just as this disease is very different for every man then the choice of treatments will also be different. I know Si-ness really rated Abbiraterone and Trevor has been on it since Sept 15 ok I admit it hasn't been quite the wonder drug that we had hoped and his PSA has continued to rise while on it but I do believe it has slowed that rise and it has bought us time and with your OH and Trevor's diagnosis that's the best we can hope for.

I also believe that the steroids have helped him I know they are not good for long term use but hey that's not really an issue. He hasn't had side affects from either the Abbiraterone or the steroids.

Yorkhul has been on steroids for a little while know and they have improved his well being .

Hand on heart I think anything that improves quality of life has to be a good thing. We haven't had Enzo so I can't comment on that but the Wiz felt that this was the right way for Trevor apparently it has less side affects and I honestly think she was right.

Keep hanging in there , I know it's hard .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 04 Jan 2017 at 19:05
User
Posted 04 Jan 2017 at 20:26
I started abiriterone a year ago and have been lucky on it. My PSA has fallen since I started. It is now 0.17.

When I started my onco said in his opinion there was little difference but chose abiriterone for me as it came with a steroid which he felt would be good for my muscles as I run so much.

I have not had any side effects apart from moobs but that may be the zoladex . The steroid is quite low dose in reality and as said by another the long term effects are not my concern sadly. I am still running long distances, staying fit , eating sensibly and have not succumbed to tiredness yet.

I am sure there are many who are on enzaclutimide who have similarly good stories, I guess it will be in part down to your oncos favourite (sic).

I hope whatever is chosen it works well, God bless.

Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 04 Jan 2017 at 21:05

Thanks Kev, this is helpful, and hopeful...my OH enjoys cycling so that will be worth mentioning to the onco when we discuss next steps. Great to see that you are thriving in spite of everything. Long may you continue to do mad things (I'll stick to the sofa).

Cheers

Eleanor

User
Posted 04 Jan 2017 at 23:06
The guys are out in force for you now Eleanor,this is what the forum is all about supporting each other and the coming together of knowledge there is also a comfort blanket kicking about somewhere.

I have been called a lot of things but never a smasher but I will take that as a compliment. 😄

My last advice would be never give up hope , Trevor will be 4 years in May 2017 from diagnosis with a very dire prognosis with a PSA of 13000 and almost the same bone mets in fact pretty similar to your OH and here we are ok not so good at the moment but , I am famous for my buts we are still holding on.

B FN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 04 Jan 2017 at 23:59

Maybe a smasher is a Welsh term Julie - either way it certainly is a compliment and you are it with bells on! You hang on to the comfort blanket (or if someone else has it at the moment I'll ask for it to be posted back to you first class) - we are doing ok with a combination of mad optimism, chocolate and alcohol, plus lots of unexpected sunshine. And this wonderful forum.

Bless your cotton socks and woolly vests as my mum used to say. Hope things get less stressful for you and Trevor (and the boys) and that Macmillan come through for you very soon.

Hugs

Eleanor

xxx

User
Posted 05 Jan 2017 at 00:05

Hi Eleanor,

I was awaiting enzalutimide a year ago but they gave me low dose dexamethosone which has somewhat against the odds brought my PSA down over the entire year. Enzalutimide waits in the box. The reasoning they gave for that rather than Abby us because I am a type 2 diabetic and enzalutimide is better as with Abby you have steroids at a much higher dose I think. But so far I wait for more activity in the cancer for enzalutimide and carry on with the dexamethosone. Good luck whatever you decide.

User
Posted 05 Jan 2017 at 14:31

Eleanor,

I am not sure they quite know why it's having this effect though I think one or two on here have benefitted similarly. I'm happy that it has already given me s year's breather, I'll take that.

User
Posted 05 Jan 2017 at 17:07
Hi Elenor

I'm sorry I don't know much about the difference between the 2 treatments. Bob had abireterone for just under 12 months, not to bad side effects and bought us also some time.

I can only reiterate what's already been said, don't give up hope. Whichever treatment pathway is chosen my fingers are so crossed for it to buy you both more time to make special memories.

Bob, (Gleason score 4+5, initial boney mets and lymph node mets) is still fighting on at just over 6 yrs now.

I know it has its difficult and trying times but keep that fighting spirit going my friend. I'm rooting for you both.Am hoping for a bit more sunshine and warmer weather soon!!

Take care

Lesley xx

User
Posted 06 Jan 2017 at 20:09

Generally speaking, I think men can do just as well on either but the oncos do sometimes have a very clear instinct that one is going to be better than the other for a specific patient.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Jan 2017 at 11:51

Thanks Paul. Hope we have a similar positive experience - and that yours continues.

Cheers

Eleanor

Show Most Thanked Posts
User
Posted 03 Jan 2017 at 17:07

Eleanor,

I'm biased because I think Enzo did well by me. I do know that my Onco preferred Enzo to Abi when she recommended the Enzo route. One other advantage of Enzo is you don't have to take steroids with them which you do have to do with Abi.

David

User
Posted 04 Jan 2017 at 14:04

Hi Elanor

I've taken both Abiraterone and Enzalutamide AT THE SAME TIME (for Stampede trial).

I've stopped taking Abiraterone after two months because it was screwing up my liver...(I have monthly blood tests).

David is right about the Steroids (Prednisolone)....and it had  ABSOLUTELY TERRIBLE side effect on me....after stopping it that is.

I'm still on Enzalutamide and will be for the next 12 months (in addition to Zoladex for the next 3 years).

 

Best of Luck....

User
Posted 04 Jan 2017 at 17:02

Hi Eleanor
This is a hopeless message from me because I just don't have the knowledge to give you any useful info but just wanted to say that I'm sending every good wish your way for a lovely summer for you x

User
Posted 04 Jan 2017 at 17:21

Not hopeless at all Sally - kindness and good wishes are hugely helpful. Right back at you as they say in the USA!

E

x

User
Posted 04 Jan 2017 at 17:24

Thanks Bill - useful to know. That's the first time I'd heard of anyone taking both together - clearly had quite an impact on your general health. How are you getting on with the Enzo? Any problems?

Cheers

Eleanor

User
Posted 04 Jan 2017 at 18:55
Hi Eleanor,

I suppose just as this disease is very different for every man then the choice of treatments will also be different. I know Si-ness really rated Abbiraterone and Trevor has been on it since Sept 15 ok I admit it hasn't been quite the wonder drug that we had hoped and his PSA has continued to rise while on it but I do believe it has slowed that rise and it has bought us time and with your OH and Trevor's diagnosis that's the best we can hope for.

I also believe that the steroids have helped him I know they are not good for long term use but hey that's not really an issue. He hasn't had side affects from either the Abbiraterone or the steroids.

Yorkhul has been on steroids for a little while know and they have improved his well being .

Hand on heart I think anything that improves quality of life has to be a good thing. We haven't had Enzo so I can't comment on that but the Wiz felt that this was the right way for Trevor apparently it has less side affects and I honestly think she was right.

Keep hanging in there , I know it's hard .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 04 Jan 2017 at 18:56

Originally Posted by: Online Community Member

David is right about the Steroids (Prednisolone)....and it had  ABSOLUTELY TERRIBLE side effect on me....after stopping it that is.

Bill,

What were the side effects you experienced after stopping the Prednisolone?

User
Posted 04 Jan 2017 at 19:05
User
Posted 04 Jan 2017 at 19:23

Julie you are such a smasher - so kind of you to respond given all you are dealing with. Many thanks for the info and advice...I'll check out the profiles of Si-ness and Yorkhul too. Even though PCa and treatments are different for everyone it helps my head to feel that I know what the possibilities are. Gives me an entirely imaginary notion of being in control!

We will hang on in there. Not much choice but either way you are such an inspiration.

Thanks and hugs

Eleanor

x

User
Posted 04 Jan 2017 at 20:26
I started abiriterone a year ago and have been lucky on it. My PSA has fallen since I started. It is now 0.17.

When I started my onco said in his opinion there was little difference but chose abiriterone for me as it came with a steroid which he felt would be good for my muscles as I run so much.

I have not had any side effects apart from moobs but that may be the zoladex . The steroid is quite low dose in reality and as said by another the long term effects are not my concern sadly. I am still running long distances, staying fit , eating sensibly and have not succumbed to tiredness yet.

I am sure there are many who are on enzaclutimide who have similarly good stories, I guess it will be in part down to your oncos favourite (sic).

I hope whatever is chosen it works well, God bless.

Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 04 Jan 2017 at 21:05

Thanks Kev, this is helpful, and hopeful...my OH enjoys cycling so that will be worth mentioning to the onco when we discuss next steps. Great to see that you are thriving in spite of everything. Long may you continue to do mad things (I'll stick to the sofa).

Cheers

Eleanor

User
Posted 04 Jan 2017 at 23:06
The guys are out in force for you now Eleanor,this is what the forum is all about supporting each other and the coming together of knowledge there is also a comfort blanket kicking about somewhere.

I have been called a lot of things but never a smasher but I will take that as a compliment. 😄

My last advice would be never give up hope , Trevor will be 4 years in May 2017 from diagnosis with a very dire prognosis with a PSA of 13000 and almost the same bone mets in fact pretty similar to your OH and here we are ok not so good at the moment but , I am famous for my buts we are still holding on.

B FN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 04 Jan 2017 at 23:59

Maybe a smasher is a Welsh term Julie - either way it certainly is a compliment and you are it with bells on! You hang on to the comfort blanket (or if someone else has it at the moment I'll ask for it to be posted back to you first class) - we are doing ok with a combination of mad optimism, chocolate and alcohol, plus lots of unexpected sunshine. And this wonderful forum.

Bless your cotton socks and woolly vests as my mum used to say. Hope things get less stressful for you and Trevor (and the boys) and that Macmillan come through for you very soon.

Hugs

Eleanor

xxx

User
Posted 05 Jan 2017 at 00:05

Hi Eleanor,

I was awaiting enzalutimide a year ago but they gave me low dose dexamethosone which has somewhat against the odds brought my PSA down over the entire year. Enzalutimide waits in the box. The reasoning they gave for that rather than Abby us because I am a type 2 diabetic and enzalutimide is better as with Abby you have steroids at a much higher dose I think. But so far I wait for more activity in the cancer for enzalutimide and carry on with the dexamethosone. Good luck whatever you decide.

User
Posted 05 Jan 2017 at 09:20

Many thanks - I'll check this out. Did they say why they thought dexamethosone might be appropriate in your case? Long may it continue to keep the PCa at bay!

E

User
Posted 05 Jan 2017 at 11:22
Hi Eleanor

I was on Abbi for two years it kept my PSA undetectable for the whole two years I only came off them as I started getting some heart issues in the end it was found not to be Abbi

I didn't find any side effects at all, also through choice I didn't bother with the steroids

Never had Enzo so can not comment on that drug

Best wishes

Si

Don't deny the diagnosis; try to defy the verdict
User
Posted 05 Jan 2017 at 14:31

Eleanor,

I am not sure they quite know why it's having this effect though I think one or two on here have benefitted similarly. I'm happy that it has already given me s year's breather, I'll take that.

User
Posted 05 Jan 2017 at 16:22

Many thanks Si. Two years sounds wonderful... hope your PSA continues undetectable and your heart problem is sorted out.

Cheers

Eleanor

User
Posted 05 Jan 2017 at 17:07
Hi Elenor

I'm sorry I don't know much about the difference between the 2 treatments. Bob had abireterone for just under 12 months, not to bad side effects and bought us also some time.

I can only reiterate what's already been said, don't give up hope. Whichever treatment pathway is chosen my fingers are so crossed for it to buy you both more time to make special memories.

Bob, (Gleason score 4+5, initial boney mets and lymph node mets) is still fighting on at just over 6 yrs now.

I know it has its difficult and trying times but keep that fighting spirit going my friend. I'm rooting for you both.Am hoping for a bit more sunshine and warmer weather soon!!

Take care

Lesley xx

User
Posted 05 Jan 2017 at 19:05

Thanks so much Lesley - both for the hopeful/helpful information and for the loving support and crossed fingers. It's all so much appreciated. Sunshine predicted for us tomorrow but your message cheered me up anyway!

Eleanor

x

User
Posted 06 Jan 2017 at 18:42

Only just seen your post, Eleanor. Yes, it seems to be an either/or thing with these two drugs unless you're on a trial; once you've had one for as long as it works, the other is unlikely to work. Tony was advised that Enza, which I think is slightly newer, was probably better for him because of the side-effect profile and the steroids that go with Abi. But most men will only be able to comment on one or other of these drugs - in some cases there will be a clear reason for one or the other, so the oncologist will probably guide the choice. When you find out the cost of these drugs, you will feel very, very grateful for our NHS!

I hope whichever drug is chosen does the trick and gives you both a good quality of life for many months.

User
Posted 06 Jan 2017 at 19:23

Hi Eleanor
I also am on Stampede J Trial and started on Enza plus abbi (and Prostap) 2 years ago. After about 1/2 months I came off the abbi as it was identified (on a process of elimination) to be the cause of liver and bowel issues. My psa dropped from 235 to under .06 for the last 18 months. I'm fine but with the usual S/effects of hot flushes, weariness etc.
My onc also told me that abbi can also effect the heart so I'm glad I'm not on it as I'm also diagnosed with angina so I'm not doing much running any more..
I hope this helps
Good luck
Paul

Edited by member 08 Jan 2017 at 09:07  | Reason: Not specified

User
Posted 06 Jan 2017 at 20:09

Generally speaking, I think men can do just as well on either but the oncos do sometimes have a very clear instinct that one is going to be better than the other for a specific patient.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Jan 2017 at 11:49

Many thanks Marje... the weight of opinion does seem to be pro Enzo, but as you say the oncologist will doubtless give us some guidance. What's cheering is the fact that Enzo appears to give a health-boost; however long or short the duration it would be wonderful if my OH could feel better in himself and less battered by the PCA and the chemo and the various side effects. Sounds as if that might not be too much to hope for.

And yes the NHS is extraordinary. Hope it survives!

Eleanor

x

User
Posted 08 Jan 2017 at 11:51

Thanks Paul. Hope we have a similar positive experience - and that yours continues.

Cheers

Eleanor

User
Posted 10 Jan 2017 at 13:36

Hi Elanor

 

No problem with EITHER Enzo or Zoladex.....other than what it was expected that is....Hot flushes etc...

 

Regards

User
Posted 10 Jan 2017 at 13:45

Hi ColU_FC

The problem was not TAKING Prednisolone but Stopping it.

As you know you must stop Steroids like Prednisolone in stages over a certain number of days/months.

I just think my 20 Days Stopping time was not long enough.

It is hard to describe how I was feeling but here it is.....

Think about being in an Airplane that is going to crash....and while you are trying to make peace with God and death everyone around you is shouting, crying, screaming and so on.....now imagine this going on every waking hour of the day...and ANYTHING can trigger this Stress level...like for example a dog barking in the distance.

This went on for about two weeks.... until the SUICIDAL THOUGHTS started...IT WAS DARK...IF I did not have my pets to take care of I would surely have done myself in....IT WAS DARK!  This lasted another 10 days or so.

I have no doubt steroids can be life saving...but they can also be deadly.

Regards

 

Edited by member 10 Jan 2017 at 13:53  | Reason: Not specified

User
Posted 10 Jan 2017 at 15:41

Thanks Bill. Forewarned is forearmed.

I'm on daily Preds and will be for the full 30 weeks of Docetaxel chemo. Hence my interest in your experiences of coming off them.

User
Posted 08 Feb 2017 at 18:18

Do you have to have had chemo(docetaxel) before starting enzo.?
I don't feel the abbis and dexo are doing much good for my O/H, but the onco doesn't seem bothered even though his PSA has risen from late 50s to 98. My husband's PSA, that is, not the onco's!

User
Posted 08 Feb 2017 at 18:33

Originally Posted by: Online Community Member

Do you have to have had chemo(docetaxel) before starting enzo.?
I don't feel the abbis and dexo are doing much good for my O/H, but the onco doesn't seem bothered even though his PSA has risen from late 50s to 98. My husband's PSA, that is, not the onco's!

Jenny,

I'm sorry to tell you that if you have abbi you can't have enzo and vice versa. This is a NICE decision which they made since the cost of these drugs is very high and the fact that if one fails then it is very unlikely that the other will then work. My Onco told me that there was a 5% chance of abbi working after my enzo failed.

David

User
Posted 09 Feb 2017 at 09:03

Originally Posted by: Online Community Member

Do you have to have had chemo(docetaxel) before starting enzo.?
I don't feel the abbis and dexo are doing much good for my O/H, but the onco doesn't seem bothered even though his PSA has risen from late 50s to 98. My husband's PSA, that is, not the onco's!

 

Hi Jenny

I think docetaxel is in the bag of tricks IF other treatments don't work/stopped working/Mets are present.....

The only reason I was on abiraterone and Enzalutamide AT THE SAME TIME was because of a trial.....The "Regular" treatment is Zoladex 2-3 years + RT and/or RP....but then again I suppose it depends what your postcode is.

".....but the onco doesn't seem bothered even though his PSA has risen from late 50s to 98. My husband's PSA"

If that is true I think that he/she is in the wrong profession....since the PSA IS what they will use to judge how the treatment is going.

You didn't say much about the MRI/G.score etc...on your BIO! I assume the reason you OH is on docetaxel it is because of Mets?

 

Regards

 

 
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