Ever Decreasing Circles part three

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Posted 28 Sep 2017 at 02:08

Hi lovey, I know that this will weigh on your mind but I am fairly sure that the trials noted PSA did sometimes rise on enza even though the actual cancer was responding well. Since it is still a reasonably new protocol, hopefully that is all they meant by wanting to look for a pattern. Your body hasn't let you down yet - take heart my friend x

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

User

Posted 28 Sep 2017 at 08:15

Originally Posted by: Online Community Member

I am fairly sure that the trials noted PSA did sometimes rise on enza even though the actual cancer was responding well.

See my profile Paul. My PSA went down when I first went onto Enzo, then it rose, then Enzo counter-attacked and it dropped again. I hope it's the same for you.

User

Posted 28 Sep 2017 at 12:30

Thanks Lyn and ColU. I shall get on with my life and hope that the counter-attack of enzalutimide starts in my next check up. I shall as I usually am, remain positive. I suppose there was a mismatch between my expectations in my head and what they said. I should not over-think this. I’m feeling better already.

At last tomorrow I get my car with hoist and scooter attached. This will give me so much freedom to get out and enjoy the day. Want to rediscover the ‘walking’ world rather lost to me over past few years.

User

Posted 28 Sep 2017 at 15:03

That's the ticket. If you get bored of going out in your new car-with-hoist, let me know ... I could really do with you writing a couple of PowerPoint slides (and training note to support) on the crime triangle for me!

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

User

Posted 28 Sep 2017 at 19:35

Hi Paul ,

Trevor has had rise on rise with PSA on Abbi he was at 500 when he started Abbi and is now 3800 our Wiz has always said it's failing when the PSA is rising and bone pain is also rising so the two things go together .

Not sure if this is the same with Enzo but I would think it is .

Keep on keeping on . X

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 30 Sep 2017 at 10:30

I just wonder julie if the PSA rises, not far to 11.98 they will argue it’s not working even if there is reduced leg pain, which there certainly is at the moment. I could be over-thinking and of course enzalutimide may start biting back as people have suggested. I am trying to hold these thoughts until and if they argue it’s not working then if I feel fine I shall question it. They do not give me many bone scans but maybe this should be the back up evidence if PSA rises.

Anyway I’m off in my PIP car, arrived yesterday after 12 week wait, with my scooter to get the most out of my day.

User

Posted 30 Sep 2017 at 19:21

Oh my goodness I can just picture you in your car tootling along , as only Julie would say Keep Tootling 😘

We are maybe at that point when A PSA is rising / tick

Pain is increasing - tick

Hence scans scheduled for next week , last scans revealed everything was stable but as they say tomorrow is another day .

Keep on Tootling my friend Keep on Tootling . X

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 30 Sep 2017 at 20:33

So glad you’ve got your car Paul, at least you can drive and that gives you such a sense of freedom.

I know John misses driving but the constant bladder spasms make it impossible and dangerous, it’s a real loss.

I hope you manage to get out and about, it definitely improves life.

Sending hugs, I know the PSA worry only too well, but I still maintain that the way you feel means more.

Take care

Devonmaid

User

Posted 15 Oct 2017 at 18:33

I'm new to this community as of today but I just had to say thank you and express my gratitude to you for sharing your journey. You have given me hope in so many ways. I read your post about bone mets and realized it's from 2014...our new diagnosis of cancer in the bone is what brought me here today with a breaking heart. Your words from three years ago resonate with me...

"As I said at the outset I have no illusions that I am not dying from Prostate Cancer but am not at 'end of life' but rather seeking to enjoy my life in whatever time remains - it is quality of life rather than quantity which drives me." Thank you for all of this especially today when I needed strength and optimism.

User

Posted 15 Oct 2017 at 19:30

Hello Elie and welcome.

Paul (and others on here with the same or similar diagnoses) are real inspirations as they show that they have cancer, the cancer doesn't have them.

I read your profile with sadness but also found it comforting to know that your man has you by his side, every step of the way. I am so sorry that your life appears to be very much deja vu , having lost your first husband to cancer.

We are indeed the people to come to for letting off steam, to rant at the unfairness of it all, but also to let you know that you do not stand alone now and even if your other half prefers to keep his thoughts and feelings to himself, you don't have to.

So, welcome and rant away!!

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails

User

Posted 01 Nov 2017 at 10:28

Ok 5 weeks on and though the clinical signs continue to be good on enzalutimide I have had another small increase in PSA to 8.02. Saw my onco today and he assured me that they will take into account how I feel and other data from scans as well as the PSA when/if it reaches 12 which was the baseline. Another six weeks to keep an eye on it.

In the meantime I mentioned an episode I had some 4 weeks ago which I forgot to put on here at the time. I had a week of sudden and quite, no very intense pain in my left leg. My left leg has been my rock as all the pain has been in the right leg. So when I get a searing pain from groin to thigh it disabled me very quickly. I had difficulty pulling myself up from my bed and walking became difficult. I managed to sort pain relief with the GP who thought it might be muscular. I have had something similar, though less severe, before and before enzalutimide so did not think it was necessarily connected. Heavy duty Pain killers took the brute of the pain away and then as the week ended I eased on on the drugs and after 8 day’s it had nearly gone completely. As I type today there is no pain at all.

Onco was a little concerned so has ordered a CT scan just to see what is happening. So hoping it stays away but action is being taken. Apart from that feel ok at the moment.

User

Posted 01 Nov 2017 at 11:38

Ouch. Glad the worst part of that pain is over for you.

Good luck with the scan

*****

We can't control the winds - but we can adjust our sails

User

Posted 01 Nov 2017 at 14:17

Good luck with scan Paul

Glad the pain has gone down

Barry

User

Posted 01 Nov 2017 at 14:17

Good luck with scan Paul

Glad the pain has gone down

Barry

User

Posted 01 Nov 2017 at 16:22

Glad the onco is doing a precautionary scan Paul, hopefully will give you comfort when you get the results but either way when one reads so many sad stories about inertia in some doctors just pleased that they are listening and acting.

Glad the pain has gone too

Take care

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 01 Nov 2017 at 20:48

Not a bad idea to have a scan Paul. Hopefully the GP is right that it’s muscle related.

See you soon

Bri

User

Posted 01 Nov 2017 at 21:12

Yes agree that the doctor is doing the right thing, hoping it’s muscular. We often think the worst but sometimes it is just something normal. Fingers crossed.

Devonmaid

User

Posted 02 Nov 2017 at 10:45

Thanks guys, there always seem to be surprises on this journey, some welcome some less so but we continue staying positive to make the most of it.

User

Posted 12 Dec 2017 at 12:50

Ok some six weeks on and some ‘partial’ good news. My PSA Up again to 9.34 a rise of just over 1. It is still working towards the baseline start for enzalutimide (11.98) which is now not far away. But CT scan shows no change and pain in right leg is clearly reduced under enzalutimide so clinically I am feeling reasonable, given the stage of my disease so that has given me six more weeks on enzalutimide.

Now the oncologist is keen to see a drop in the PSA, as I have theorised I suspect he would be under nhs pressure to stop at the baseline figure. Anyway he has doubled my steroid dose back to what it was last year which resulted in a PSA drop for a year so hoping it will impact on the PSA. Plus I get to enjoy my food for Christmas! He is also talking of Radium 223 next, so still uncertain times.

So the journey continues, stuttering a little, but given the terrible losses on the forum these last few weeks, I feel lucky to be still here and on this uncertain journey. So another Christmas will be enjoyed and for that I can feel good.

User

Posted 12 Dec 2017 at 14:35

A lovely update Paul.

Enjoy your Christmas turkey and trimmings and stuttering along or not, I hope you continue to be well enough to enjoy outings on your scooter.

Best Wishes
Sandra

********

We can't control the winds - but we can adjust our sails

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