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Post Chemo & Enzalutamide

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User
Posted 04 Jul 2014 at 13:39

Well, 2.5 months after finishing chemo and PSA was down at 2.09 (see profile for full history), my lovely hubby had the bad news that PSA on the move upwards already and now up to 26. He has mets to pelvis, spine and sternum.

You wouldn't think it to look at him as he looks well and is still fairly active and his hair has returned post chemo.

Luckily he has a fantastic Oncologist who has straight away prescribed Enzalutamide, which he started on Wednesday He hasn't been on Abiraterone as Oncologist on the ball. I just hope this works wonders as it is purported to do, as at age 59, he's too young to give up his beloved fell-walking and motorbiking.

 

 

 

User
Posted 04 Jul 2014 at 23:07
Hi,

Yes good news that your OH has been offered Enzalutamide and if it follows the same path as myself it will be monitored monthly via blood tests. This is probably due to the cost but it matters not as at least regular blood tests allows us to know what is going on.

Si, at the moment Enzalutamide can't be prescribed if you have had Abiraterone which is the case with yourself. However NICE are sitting this month and are being pressed by PCUK to overturn this arbitrary decision so keep a look out.

Best of luck all,

Life is for living

Barry (alias Barrington )

User
Posted 26 Oct 2014 at 09:45

The ruling takes no account of the effectiveness of Abiraterone. Some men get years on it and some (like me) get absolutely nothing. My Oncol reckons that there is a good case to give it to men that receive no benefit from Abiraterone. The longer Abby works for you the less likely Enzalutamide will be effective but until you try it, you don't know! NICE has turned down every single drug for PCa in the last decade (at least initially). It took over 60 years for the first life extending drug to be approved for PCa (Docetaxel 2004) whilst we have seen a proliferation of breast cancer drugs since the seventies (with an accompanying survival rate). Am I on my high horse? You bet! http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-yell.gif

Nil desperandum

Allister

User
Posted 02 Aug 2014 at 15:41

Well, a good result after 4 weeks on Enzalutamide. PSA down to 1.4 from 26, also no additional side effects. Had a week in the Lake District and we did some fabulous ridge walks, Hubby so pleased as this is what we do and he hates not to be out on the fells. Long may it continue! Oncologist prescribed 8 weeks supply to get us through 2 weeks holiday in the Lake District - here's to 2 weeks of walking, cycling and feeling good! Fingers crossed the positive effects continue for some time.

Glen

User
Posted 10 Sep 2014 at 15:44

Latest results after appointment with Oncologist. PSA down to 0.16, yes 0.16! The lowest ever. Haemoglobin steady at 10.1. My OH is "cock-a-hoop"! He also says he has never felt better. Off to Keswick on Friday to climb some mountains! Long may this continue with the "magic beans". We are now 2 years down the line of first diagnosis with a PSA of 117.

I'll keep posting updates and I have updated my profile.

User
Posted 11 Sep 2014 at 20:47

Glen, so pleased to see this update from you. Enjoy the joy!

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

User
Posted 22 Oct 2014 at 18:43

Great news! Keep it coming!

 

Flexi

User
Posted 22 Oct 2014 at 19:31

Fantastic news, long may it continue.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 22 Oct 2014 at 21:22
brilliant news, latest research in uSA shows that those that respond well to Enza also respond well to Abby, because of the order your hubby has had treatent this should also be available to him. If Enza is working then keep with that it is a wonderful drug if it is prescribed early enough.

xx

Mo

User
Posted 23 Oct 2014 at 18:57

Unfortunately, it is presently the case that if you have had Enzalutamide , then you can't have Abiraterone.

'tis one or t'other for the time being at least.

User
Posted 23 Oct 2014 at 19:18

Great news. Keep it going!

User
Posted 24 Oct 2014 at 06:53

What great news, just what we like to hear

Si

Don't deny the diagnosis; try to defy the verdict
User
Posted 24 Oct 2014 at 08:51

Thanks everyone. Just to confirm, Abiraterone will still be available as had Enzalutamide first. It's a roller coaster! Off to see Lee Evans tonight for some laughs!

Also, RIP Alvin Stardust. My uncles knew him in his days of Shane Fenton.

 

User
Posted 17 Dec 2014 at 16:57

This is a great news. Certainly time to enjoy christmas and the new year!

User
Posted 17 Dec 2014 at 18:37

Great news Glen http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

 

I've now been promised a shot at Enzalutamide in the New Year so fingers crossed .......   http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

Nil desperandum

Allister

User
Posted 17 Dec 2014 at 20:34
Thrilled to bits to read this, wonderful news xxx
User
Posted 18 Dec 2014 at 00:47

Oh Glen so pleased to read your news. Have a wonderful Christmas x

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

User
Posted 18 Dec 2014 at 17:32

Allister, I hope the magic beans work for you too!

User
Posted 18 Dec 2014 at 18:27

Good for you Allister. Hope it works wonders for you.

All the best to you and your family for Christmas

PS We are away for Christmas with our friends from Carrickfergus

User
Posted 19 Dec 2014 at 13:03

started enzalutamide on monday psa 28.5 , so tired with it , but i hope it will work

will post

User
Posted 13 Jan 2015 at 20:35

Originally Posted by: Online Community Member
Thanks so much for the update, it's really helpful to have a view on Enzo as few people have reported on here about it.

Here's hoping the PSA is staying down too.

Best wishes
Allison

I've just started Enzo so I'll add my experiences to this thread in order to provide more information about it. Please see my profile for my history to date. Basically I've been very lucky so far, advanced prostate cancer diagnosed but I've had little change to my pre-PCa physical condition. The only side effects I've had from all the hormone treatment so far is mild flushes and very mild fatigue. This holds true for the Enzo. Blood test on 16/1/15 to make sure the Enzo isn't damaging my liver, if so, the Onco will say stop taking it. Then the next consultation is on 29/1/15 when we will find out if the Enzo is having any effect on PSA levels.

Edited by member 13 Jan 2015 at 20:53  | Reason: Not specified

User
Posted 05 Feb 2015 at 09:08

My hubby's latest results after appointment with Oncologist. PSA down to 0.01, the Oncologist has said he won't get a lower reading from this, it will just say<0.01. This is the lowest reading and PSA has continued to fall. Haemoglobin steady at 10.5. My OH is "cock-a-hoop"! First diagnosis with a PSA of 117 was in September 2012. We're still fell walking, albeit at a slower pace and maybe not so many mountains!

Here's hoping magic beans continue to contain the PCa.

All the best.

 

Glen

User
Posted 05 Feb 2015 at 12:44
Fabulous news Glen long may that continue

Xx

Mandy Mo

User
Posted 09 Feb 2015 at 14:41

good news 

hope the beans keep working 

Ahmad

User
Posted 09 Feb 2015 at 14:54

This really is great news Glen, long may it continue 

Si

Don't deny the diagnosis; try to defy the verdict
User
Posted 19 Feb 2015 at 21:18
Hello

I joined the Enzo users 3 days ago as part of the Stampede Group J so am also taking Abiraterone plus Opeprazole and Prednisolone. This is on top of the normal HT therapy.

I think the idea is to hit the cancer with everything early on

I was diagnosed in late December 2014 with a PSA of 214 and spread to left hip bone.

I started the HT in early January and by mid February PSA had dropped to 40.

It will be interesting to see how my next results (in 2 weeks) will be after 2 weeks of the enzo/Abby cocktail will be.

I'm a little apprehensive about the side effects though but so far am only rattling with all the pills

I share everyone's hope that this drug does what it says on the label

Paul

User
Posted 03 Mar 2015 at 08:32
It's really good to read this, our oncologist said they prefer Enzo to abby tabs as the side effects they see are much lower. This helps us make our decision about whether to go for chemo first when the time comes (it's coming in the next three months or so). Thanks for the updates.

All the best

Allison

User
Posted 26 Mar 2015 at 18:37

Twelve weeks on Enzo and counting. PSA at week 8 was 6.77 and is now 6.46.

Since the PSA is stable they are going to deliver the Enzo to me at home every four weeks rather than make me go to the hospital to pick it up. Wow! This is private patient treatment from the NHS. I didn't ask for this, it was offered at today's appointment.

Bloods will still be done every four weeks. Next appointment with Onco is in eight weeks time.

User
Posted 28 Mar 2015 at 19:16

My husband's next appointment is 1st April, will post update then. He had bloods done yesterday.

Glen

User
Posted 29 Mar 2015 at 05:40

Good luck and fingers crossed here for continued good results

Bri

User
Posted 31 Mar 2015 at 00:56

Well i,m in a lot of pain with my back , last psa was 72 from 26 , but oncologist thinks its because of the radiotherapy i had on the site of my broken leg 

I don't think that enzo is working on me , they have put me on morphine to ease the pain , but it is still there , and now i,m having tingly feeling in my legs , seeing oncologist next week , and see how the psa is going 

 

thought i update you all 

 

Ahmed

User
Posted 01 Apr 2015 at 17:29

gotta love those magic beans!! Atb,El

User
Posted 08 Apr 2015 at 18:13

Originally Posted by: Online Community Member

Is it better to take capsules before bed or first thing. I have been taking mine just after brekkie with cup of green tea to wash them down due to size.

I don't know which is best. I take mine at 9am each day.

User
Posted 08 Apr 2015 at 18:18

My OH takes his with his brekki around 8.30/9, however, apparently you can take them at any time so long as similar time each day.

 

User
Posted 08 Apr 2015 at 18:37

My husband took his in the morning too.

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User
Posted 04 Jul 2014 at 16:33

Hi Mrs T

I have no experience of Enzalutamide but after finishing Chemo i went on Abiraterone and after 11 months PSA is still undetectable. So you still have that treatment and there are many more.

Best of luck with Enzalutamide and let us know how you get on as i think this will be my next one http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

Si x

Don't deny the diagnosis; try to defy the verdict
User
Posted 04 Jul 2014 at 19:00

Yes, very best of luck with this. Think enzo will be our next port of call too. Let us know how your husband gets on,

 

Regards. Fiona.

User
Posted 04 Jul 2014 at 19:16
Mrs T your onco is spot on this is the drug of choice post chemo for men with mets and any other spread. The sooner it starts the better. You still have abiraterone and all the other treatments that are becoming available. Wish you sll the best

Mo

Xx

User
Posted 04 Jul 2014 at 20:21

Thanks everyone. I will post update after 4 weekly check-up. We're off to The Lakes for a week soon so hope to get some walking in! I realise how lucky we are to get this new drug as the cost is high!

 

Glen

User
Posted 04 Jul 2014 at 23:07
Hi,

Yes good news that your OH has been offered Enzalutamide and if it follows the same path as myself it will be monitored monthly via blood tests. This is probably due to the cost but it matters not as at least regular blood tests allows us to know what is going on.

Si, at the moment Enzalutamide can't be prescribed if you have had Abiraterone which is the case with yourself. However NICE are sitting this month and are being pressed by PCUK to overturn this arbitrary decision so keep a look out.

Best of luck all,

Life is for living

Barry (alias Barrington )

User
Posted 07 Jul 2014 at 10:24

I'd really like to try Enzalutamide but as I had a short and very unsuccessful period on Abiraterone, I can't get it at the moment. Instead I'm about to have my 15th dose of Chemo http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cry.gif

I wouldn't mind but it doesn't seem to be working as well second time around http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cry.gif

Nil desperandum

Allister

User
Posted 07 Jul 2014 at 17:00

Hi, that's awful, you should be able to try it, especially as Enzalutamide has less side effects.

 

Hope chemo goes ok.

 

Glen

User
Posted 02 Aug 2014 at 15:41

Well, a good result after 4 weeks on Enzalutamide. PSA down to 1.4 from 26, also no additional side effects. Had a week in the Lake District and we did some fabulous ridge walks, Hubby so pleased as this is what we do and he hates not to be out on the fells. Long may it continue! Oncologist prescribed 8 weeks supply to get us through 2 weeks holiday in the Lake District - here's to 2 weeks of walking, cycling and feeling good! Fingers crossed the positive effects continue for some time.

Glen

User
Posted 10 Aug 2014 at 10:52

Hi, Just into third week of Enzalutamide, side effects are a bit of a problem, tiredness - cannot do much more than 2 hours activity, walking or gardening before having to rest and sleep. Some numbness in left leg and tendons which loosen up about half way into a walk.

Could be I'm still coming  off the chemo

User
Posted 10 Aug 2014 at 10:58
Thanks so much for the update, it's really helpful to have a view on Enzo as few people have reported on here about it.

Here's hoping the PSA is staying down too.

Best wishes

Allison

User
Posted 13 Aug 2014 at 20:34

Hi eckingtonjohn. It could be that you've just come of chemo as my husband came off chemo mid-April so has had a bit longer to 'get back to normal', hopefully your fitness will improve.

I'll keep posting updates as to how the treatment is going. Blood test 20/8 but this is just for info. Another blood test on 10/9 just before hols when hopefully everything will still be under control and can get a 4th prescription.

I have to say my hubby is probably feeling about the best he has since diagnosis with no additional side effects to HT, but, life is governed by regular check ups and that nervous feeling when the next one is due. It was a shock post chemo to have an increase.

 

Glen

 

User
Posted 10 Sep 2014 at 15:44

Latest results after appointment with Oncologist. PSA down to 0.16, yes 0.16! The lowest ever. Haemoglobin steady at 10.1. My OH is "cock-a-hoop"! He also says he has never felt better. Off to Keswick on Friday to climb some mountains! Long may this continue with the "magic beans". We are now 2 years down the line of first diagnosis with a PSA of 117.

I'll keep posting updates and I have updated my profile.

User
Posted 10 Sep 2014 at 17:22

Fantastic news,

A much needed boost today.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 10 Sep 2014 at 17:24

Great news!  Go get those walks in!

 

flexi

User
Posted 10 Sep 2014 at 17:29
brilliant news, as you say your Onco is on the ball. Enjoy your walking up there in the beautiful Keswick area. We really needed some good news today

xx

Mo

User
Posted 11 Sep 2014 at 20:47

Glen, so pleased to see this update from you. Enjoy the joy!

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

User
Posted 22 Oct 2014 at 18:32

Update following my husband's appointment with Oncologist today after 16 weeks on Enzalutamide. PSA 0.06, haemoglobin 10.5. 8 more weeks prescribed. Next appt mid-Dec.

Fabulous result, the magic beans are still doing their stuff and knocking pack the PSA! We drank a red wine toast tonight!

User
Posted 22 Oct 2014 at 18:43

Great news! Keep it coming!

 

Flexi

User
Posted 22 Oct 2014 at 19:31

Fantastic news, long may it continue.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
 
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