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Post Chemo and Enzalutamide Part 2

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User
Posted 10 Jun 2015 at 17:55
Hi

I thought I would start a new thread. This is an update on how my hubby is getting on 2.75 years after diagnosis with Advanced PC. Please read my profile for full history but in summary chemo finished over a year ago and he has been on Enzalutamide (magic beans) since 1 July 2014.

He has just had Onco appt today. PSA still low at 0.03, Haemaglobin 10.

Still appear to be doing their stuff and he's talking about doing Helvellyn again when we go to Ullswater at the end of June for 7th wedding anniversary!

Next appointment beginning of September. Thought this would be a good update on Enzalutamide. It would be great if others continued to add their updates.

Glen

Edited by member 10 Jun 2015 at 21:22  | Reason: Not specified

User
Posted 10 Jun 2015 at 20:08

Helvellyn? Very very fond memories. Wow, good luck and go for it. Striding Edge, that tarn half or 3/4 way up if you start from Glen Ridding.

Excellent news for you both. 7th anniversary? Hopefully no itching? :-)

atb

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User
Posted 10 Jun 2015 at 20:39

Great news and long may it continue!

User
Posted 10 Jun 2015 at 21:56

Fantastic news Glen - and happy anniversary to you both xxx

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

User
Posted 10 Jun 2015 at 22:09

Very pleased for you both Glen and Happy Anniversary for the end of June

We can't control the winds - but we can adjust our sails
User
Posted 10 Jun 2015 at 22:29
Oh that's amazing news. Thrilled to bits to read this.

Lots of love

Allison xxx

User
Posted 10 Jun 2015 at 22:32
Up Striding Edge, back via Swirral Edge -- happy days!

Have a great time and a very happy anniversary

User
Posted 10 Jun 2015 at 22:56
Glen

happy anniversary for the end of the month, how fab to spend it up on Ullswater it is so beautiful one of the best places in England and as an avid traveller one of my favourite places in the world.

As for your OHs continued success with Enza I am really happy for you, we do not hear much on the forum about this drug, so to hear of someone having a big success with it is fantastic.

all the best

xx

Mo

User
Posted 11 Jun 2015 at 07:01
Hi Glenda,

Great results.

Have a wonderful anniversary in the Lake District (my favourite place).

Steve

User
Posted 11 Jun 2015 at 09:50

Great news ! Enjoy your holiday !

 

Fiona.

User
Posted 11 Jun 2015 at 11:39

Hi GlenT

Your news is so wonderful and long may it continue.

My experience with enzalutamide is that I have been taking it together with abiraterone and prostap since I was diagnosed in December last year.
Which of the drugs is working best I don't know but my PSA is down from 234 on 12 Dec to 0.68 on 2nd March and has continued to reduce to its present 0.07 measured on 5th June.
I am on Stampede Group J and have had no RT or chemo.
I can only hope that this continues.

It does seem to be working well on me so far and I would presume that it will for you too.

Paul

User
Posted 02 Sep 2015 at 20:35

Don't give up on the magic just yet Glen. Have a look at my results. The beans keep fighting back!

User
Posted 02 Sep 2015 at 20:39

So sorry to read your update Glen - but in a weird way pleased that it was at the end of the summer rather than the beginning - especially if you managed to get the walking trip in?

We have had members that have done well on chemo after enzo - fingers crossed for you x

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

User
Posted 02 Oct 2015 at 15:28

Sorry to hear that news that feels like a worrying doubling time, if it's three months since last check up. But they are taking a rounded approach to the problem which is good. I understand that radium 223 works best when there is activity in the cancer so maybe that is a good call next. I hope you get it with all the changes going on. Sounds like you are getting on with life which is cool too. Good luck.

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User
Posted 10 Jun 2015 at 20:08

Helvellyn? Very very fond memories. Wow, good luck and go for it. Striding Edge, that tarn half or 3/4 way up if you start from Glen Ridding.

Excellent news for you both. 7th anniversary? Hopefully no itching? :-)

atb

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User
Posted 10 Jun 2015 at 20:39

Great news and long may it continue!

User
Posted 10 Jun 2015 at 21:56

Fantastic news Glen - and happy anniversary to you both xxx

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

User
Posted 10 Jun 2015 at 22:09

Very pleased for you both Glen and Happy Anniversary for the end of June

We can't control the winds - but we can adjust our sails
User
Posted 10 Jun 2015 at 22:29
Oh that's amazing news. Thrilled to bits to read this.

Lots of love

Allison xxx

User
Posted 10 Jun 2015 at 22:32
Up Striding Edge, back via Swirral Edge -- happy days!

Have a great time and a very happy anniversary

User
Posted 10 Jun 2015 at 22:56
Glen

happy anniversary for the end of the month, how fab to spend it up on Ullswater it is so beautiful one of the best places in England and as an avid traveller one of my favourite places in the world.

As for your OHs continued success with Enza I am really happy for you, we do not hear much on the forum about this drug, so to hear of someone having a big success with it is fantastic.

all the best

xx

Mo

User
Posted 11 Jun 2015 at 07:01
Hi Glenda,

Great results.

Have a wonderful anniversary in the Lake District (my favourite place).

Steve

User
Posted 11 Jun 2015 at 09:50

Great news ! Enjoy your holiday !

 

Fiona.

User
Posted 11 Jun 2015 at 11:39

Hi GlenT

Your news is so wonderful and long may it continue.

My experience with enzalutamide is that I have been taking it together with abiraterone and prostap since I was diagnosed in December last year.
Which of the drugs is working best I don't know but my PSA is down from 234 on 12 Dec to 0.68 on 2nd March and has continued to reduce to its present 0.07 measured on 5th June.
I am on Stampede Group J and have had no RT or chemo.
I can only hope that this continues.

It does seem to be working well on me so far and I would presume that it will for you too.

Paul

User
Posted 11 Jun 2015 at 19:01

Thanks for all your positive coments. 

Paul, good to hear that your Abbi Enza combo is working, long may that continue!

Yes, Patterdale and Glenridding hold very special memories, and we had our honeymoon there. We stayed in a static on Gillside Farm. We had Wesley the Westie then and he won two rosettes in the Patterdale show two years running - "the dog the judge would most like to take home with them", lol!

Yes Helvellyn is weather dependent, but will either be via Striding and Swirral, or Striding and Grisedale Tarn! Or then again, it might just the ferry to Howtown and walk back via Sykes farm and homemade cakes!

Many thanks

 

Glen

User
Posted 02 Jul 2015 at 16:29

Consultation with Onco today when I got the last two PSA readings:

PSA at week 20 was 9.16.

PSA at week 23 was 12.06.

PSA at week 26 was 11.55.

26 weeks on Enzo now. Onco says all the other Bloods results are still very good and taking into account I still feel no ill effects from the PCa she has prescribed a further 8 weeks of Enzo. One downside, my BP has risen. This is one of the common side effects of Enzo. Therefore, Onco to tell my GP to prescribe medication to bring it down.

Next consultation on 27 August 2015.

Conclusions - At my last update I feared my time on the magic beans was coming to an end, the next stop would be Chemo and for the first time since being diagnosed that I would feel 'ill' and my quality of life would be impacted. I was wrong. Woo hoo! A bit more time yet on the magic beans.

User
Posted 03 Jul 2015 at 07:21

Hi all please don't think that chemo always makes you fell ill. My oh has had docetaxel and now is having Cabazataxel. He has tolerated both quite well. A little tiredness and taste change for a few days, however it really does help with any bone pain, no loss of hair and despite having advanced pic he still looks really well. Hopefully if you get to need it you will cope just as well, please don't fear it. Enjoy your hols.

User
Posted 03 Jul 2015 at 07:23

Sorry missed the chemo bit twelve months ago so you do know about it apologies and have a good holiday.

User
Posted 03 Jul 2015 at 10:27

lovely to see things going well, dad is about to start on enzo, but not yet had chemo. really hoping for good results.

Best wishes

 

 

User
Posted 02 Sep 2015 at 19:42

Well, the magic beans are magic no more and just common or garden beans - OH just been for tests today and PSA rocketed to 4.2. That might not seem high compared to previous results but it was 0.04 12 weeks ago. Got to have CT and Bone Scans and further blood test and appointment within a month. Looks like 2nd lot of chemo is next port of call. Not sure what options are left now...

 

Just opening a 2nd bottle of red....

 

Take care all.

 

Glen

User
Posted 02 Sep 2015 at 20:35

Don't give up on the magic just yet Glen. Have a look at my results. The beans keep fighting back!

User
Posted 02 Sep 2015 at 20:39

So sorry to read your update Glen - but in a weird way pleased that it was at the end of the summer rather than the beginning - especially if you managed to get the walking trip in?

We have had members that have done well on chemo after enzo - fingers crossed for you x

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

User
Posted 02 Oct 2015 at 13:04

Latest update following Oncologist appointment 30/9.

PSA now 9 (from 4.2). However, result of scans shows no further spread in bones and nothing in soft tissue.

As no spread and no major pain, decision to continue on Enzalutamide for 8 more weeks then review with possibility of Radium 223 or Cabazitaxel. Radium 223 coming of Cancer Drugs fund but highly likely to come back on through NICE.

At least we can go to Kielder Observatory for the dark skies next weekend and then 2 weeks in The Lakes!

Glen

User
Posted 02 Oct 2015 at 15:28

Sorry to hear that news that feels like a worrying doubling time, if it's three months since last check up. But they are taking a rounded approach to the problem which is good. I understand that radium 223 works best when there is activity in the cancer so maybe that is a good call next. I hope you get it with all the changes going on. Sounds like you are getting on with life which is cool too. Good luck.

User
Posted 02 Oct 2015 at 18:49

Yes, ties in with what Onco said.

Certainly are cracking on with life, local brewery for beers and meal tonight, Kielder Dark Skies next weekend, then The Lakes for a couple of weeks!

Good job I only work 3 days per week!

 

Glen

User
Posted 22 Oct 2015 at 15:39

The magic beans counterattack is holding PCa for now. I hope it's the same for you Glen.

User
Posted 01 Nov 2015 at 20:50

Still in a state of limbo until next appointment on 25th November. Really hoping that the PSA stabilises as per your results! Batting on in the meantime!

Many thanks for asking.

Glen

 
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