Ever Decreasing Circles part three

User

Posted 02 Jul 2017 at 22:10

This should be dealt with, half the posts on my thread are linked to getting to the next page.

User

Posted 02 Jul 2017 at 23:27

I don't know why people do that - it is a fairly simple matter to just go back a page and scroll down.

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

User

Posted 03 Aug 2017 at 13:12

Five week review of enzalutimide on progress completed. PSA down but only slightly 5.7-5.02 but pain in the legs has eased a little and onco more concerned about general well-being. So good outcome for now and 8 weeks more pills received. So although the fatigue remains quite difficult it seems possible that enzo is working ok for now and let's hope it continues,

User

Posted 03 Aug 2017 at 14:47

That's good news Paul - sod the PSA trends and trust how you feel x

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

User

Posted 03 Aug 2017 at 22:50

Paul, John has been told that radium 223 will not affect the PSA and it is fully e petted to continue to rise but it helps anyway apparently. We start the process on 22nd Aug for six months, things aren't great chez moi, but could be worse so always happy about that. Let's take what we can get at this stage, we are the lucky ones.

Lots of love

Devonmaid xxx

User

Posted 04 Aug 2017 at 00:11

You are right Allison. I am in my sixth year, John is in his seventh so we can celebrate that resistance, despite the problems. Si and Trevor are over four/five years (I think) yet we are all travelling together. Some days I think life will go on for a while, sometimes I am less confident of that. Most days, I wake up, check I'm still here and still functioning and make the most of it and when that day is a bad one I do less and look forward to waking up again knowing that there will be quite a few good days.

To all of us suffering from bony mets let's go as far as we can. As Top Gun would have said 'life is for living'

User

Posted 04 Aug 2017 at 13:05

Good outcome Paul. Many more good days /months/years to come 👍

Bri

User

Posted 04 Aug 2017 at 17:16

Paul you are so right Life is for living although as you say some days that is easier said than done .

I echo what Lyn has said I wouldn't be to disappointed with the PSA levels Trevor has had a few drops on Abbi but over the past two years the general trend has been upwards and totally agree that it is more important how you feel .

Says She who feverishly writes down every PSA level at appointments like a demented secretary . 😉

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 25 Aug 2017 at 12:58

So diabetes appointment today. Great to see better control since change of meds. My hBac1 down from 74-64 which is really good. Lost weight. Vit D back to normal so all in all in good shape to support everything else. No change of meds needed and six month follow up. Quite pleasing and tolerating enzo at moment makes things really ok.

Edited by member 25 Aug 2017 at 19:53 | Reason: Not specified

User

Posted 25 Aug 2017 at 14:43

Well done Paul. Very pleased for you

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

User

Posted 25 Aug 2017 at 16:32

Paul

Great to hear your news, hope it continues.

Thanks Chris

User

Posted 25 Aug 2017 at 17:11

Good news, hope you keep tolerating the Enzo and six month follow up shows how pleasing the results are. Best wishes, Ian.

Ido4

User

Posted 26 Aug 2017 at 07:34

Keep the good news coming Paul

Bri

User

Posted 26 Aug 2017 at 07:52

Great News Paulhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

Don't deny the diagnosis; try to defy the verdict

User

Posted 28 Aug 2017 at 21:53

Fab news Paul ,

I have been a little late replying to everyone I have been knee deep in puppy poop!

Fantastic that you are feeling good and Enzo is helping X

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 26 Sep 2017 at 12:52

So latest oncology check up. Slight reversal in PSA trend back up to 6.86 from 5.01. They are overall happy to continue on enzalutimide as they look for a pattern with PSA. I was just under 12 when they started so hopefully it will stabilise for next time. Five week appointment to check PSA so keeping a close watch.

Bit disappointed as I feel reasonable but will wait and hope for a better result next time. I was hoping for a longer respite on enzalutimide and maybe I will still get it but only four months in so far.

User

Posted 26 Sep 2017 at 12:57

Mostly good news then Paul. Very pleased for you and good luck with the next one

Enjoy whatever cricket is left. John took himself off to Chelmsford today so he's getting the last of his summer's cricket fix.

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

User

Posted 26 Sep 2017 at 20:28

Hi Paul,

The one thing I have learnt in the last few months is Cluck the patterns In PSA it's all,obout how you feel at this moment in time and if you are feeling ok then the PSA is Irrelevant.

Trevor has had huge rises and huge drops nothing makes sense, the old phrase

To day is a good day springs to mind

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 27 Sep 2017 at 21:35

Any rise is a worry Paul, but my friend has found that her hubby's rise has suddenly stopped and it's dropped, no treatment at all! John's is now 42 as the Radium treatment doesn't not have any impact on the PSA, so I'm hoping he'll get something added in shortly to tackle that rise. In the meantime, he's ok, obviously someone with cancer is unlikely to be bouncing up and down, but after nearly seven years, we will take what we can get!

Definitely base it lol on how you feel. Fingers crossed for you as always.

Devonmaid

User

Posted 27 Sep 2017 at 22:25

I do feel better on the enzalutimide and I do take heart from that. I guess my concern was that there appeared to be some protocol hidden behind their words. If I reach the PSA I was at before enzalutimide I think they will regard it as failing and stop, whatever I feel. It’s costly and the NHS has its limits. I could be over thinking it but had hoped to get a reasonable period, which of course I may get if the PSA comes back down or stabilises. Sorry just a little unsettled by what the onco said, a new person which is always harder to trust. I shall see the main person before they take action. Anyway five weeks to think of other stuff.

User

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

User

Posted 12 Dec 2017 at 15:46

Thanks for the update Paul. It's good to hear that clinically you feel better on the enzalutamide. Also good that the scans show no change and that pain is lower.

Here's hoping with more time and an increase in the steroid dose your PSA reduces.

It is indeed a very uncertain journey we are all on, these last few weeks have been difficult for so many.

Enjoy your Christmas lunch!

Best wishes, Ian.

Ido4

User

Posted 12 Dec 2017 at 15:52

Enjoyed reading your update Paul. Good luck with the next part of your journey, hope you get some good news regarding your PSA. In the meantime have a great Christmas.

Debbie x

User

Posted 12 Dec 2017 at 17:06

Hi Yorkhull
Thanks for the update. As you say after the losses over the last few weeks it's good to hear something positive. My husband isn't as far down the line as you, only diagnosed in March this year so following what is happening to you with interest. He did early Chemo which seemed to have worked well at the time but a couple of months later his PSA has doubled in 5 weeks so we wonder what the next treatment is going to be. Next Onco visit is March unless she picks up on latest PSA.
I really hope you have a good Christmas and are able to enjoy it.

User

Posted 12 Dec 2017 at 19:13

I was diagnosed before early chemo was the protocol so various forms of HT and steroid have kept me going for nearly six years. The toolbox is emptying though so I remain realistic about the future. But we shall see what 2018 brings.

User

Posted 12 Dec 2017 at 19:20

A 6 week respite and the joy of a Christmas dinner without limits - small things to be thankful for. Really pleased that the pain has reduced recently xxx

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

User

Posted 12 Dec 2017 at 19:26

Hi Paul
Best of luck on the enzalutamide .
I'm now entering my 4th year with it. Psa still down at .05 and I'm still active.
I take it with Prostap so I can't tell which is working.

Anyway best of luck I'm gunning for you.

Paul

User

Posted 12 Dec 2017 at 19:56

Paul, 4 years that’s good. I have been on prostap from the start and still on it. I think it does a job but with limitations once you are hormone resistant. So I had casodex for a year, then dexamethosone and now enzalutimide. So I think because of the way it works and I can only think of a simple phrase as I cannot describe the medical argument, enzalutimide deals with the residual cancer hopefully preventing the metatestes growing further. I doubt whether, given the rises will give me 4 years but hopefully a while longer. Have a good Christmas

User

Posted 13 Dec 2017 at 07:07

Good news that recently things have been quite steady for you and that your pain has been significantly lowered. In any case it’s nice to get through this winter period and xmas and darkness with as little extra aggro as possible. Enjoy yourself Paul and best wishes

User

Posted 13 Dec 2017 at 20:25

This has nothing to do with PCA .

I am just watching Masterchief the Proffesional and the Narrator sounds just like you , a kind of sexy Mr Kipling 😉

The chocolate mousse must be served warm with a slice of coconut twist and a budgie Bon Bon , finished of with a quinell of asparagus ice cream .

So just a slice of Raduim will be a doddle .

Once again XMas is here enjoy with your family my dear friend and enjoy a quinell or two on me .

Oh chuck in a few salted caramel fudge twists . 😜

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 14 Dec 2017 at 08:22

Lovely message Julie. You know I always enjoy a good quinelle or two. Though difficult, hope you do too with the boys.

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