Ever Decreasing Circles part three

User

Posted 14 Dec 2017 at 22:31

I was just thinking today that at least we can relax now that John’s fifth Radium jab has been given Paul. PSA now 77 but no more consults until after the festive season somthat in itself is a relief. Wishing you a very Merry Christmas. If you get Radium it should be a doddle. Talking to the oncologist this week, they say that many oncologists are misinterpreting NICE guidance and waiting far too long to introduce Radium and that it’s effects are better when used earlier. John has done well, apart done the PSA rise, though some of that will be inflammation. Good luck for the next phase of treatment, I’m sure we will be put on a new treatment in 2018.

Take care

Devonmaid xxx

User

Posted 15 Dec 2017 at 18:35

Thanks Allison and a good Christmas and new year to you and JOHN. I know my onco team liked radium 223 as it was trialled in Sheffield before approval. And he has mentioned it to me as a next stop. I do hope that the enzalutimide lasts a good while longer because I have reduced pain and it seems to be doing its job, just the PSA slowly rising is frustrating. I hope the steroid will help as it did last year.

Will stay positive and certainly enjoy the holiday break.

User

Posted 23 Jan 2018 at 11:28

Ok time for an update. For those reading for the first time a brief, hopefully positive summary. It is now 6 years since I was diagnosed. Firstly PSA 7.5; Gleason 9 (5+4) and CT Scan showed no soft tissue spread. In February 2012 a promising curable prognosis was changed when my bone scan revealed bone metastestes. Incurable prognosis and an intitial prognosis of two years. This always seemed a tad pessimistic and six years on feel I may still have a year or two left. You can see the range of treatments I have had on my profile.

So oncology appointment today. Been on enzalutimide for about 9 months now and clinically it feels good. However PSA has risen each check up though a slow rate. This time up to 10.83 so approaching the baseline of 11.98. Onco keen though not to ignore the clinical progress and for the first time said he would try and keep me on enzalutimide beyond the baseline of clinically progress is maintained. Good to hear. Have upped dexamethosone since last visit to support keeping PSA down. Now proposing in 4 weeks to add zometa/zoledronic acid into the mix. This could support my bones and I know lots of people have this. No experience of it so we shall see how it goes.

Overall some encouragement I think and the journey continues. I do get quite tired and my walking is poor but tiredness does not lead to as much ‘fuzzy headiness’ I am experienced before and with my scooter I am hoping to stay well enough to enjoy ‘scooting’,around this summer.

So I hope an optimistic report for those starting their journey especially but also friends on here.

User

Posted 23 Jan 2018 at 14:45

Very optimistic Paul.

Good luck and Best Wishes

Sandra

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

User

Posted 23 Jan 2018 at 15:22

Thanks for the update Paul. Best wishes, Ian.

Ido4

User

Posted 23 Jan 2018 at 16:41

It is surprising that you have never had zometa until now - if you can get past the initial bone pain flares you might be whizzing around without your scooter by summer. I assume you have a dental appointment booked before you start? And I seem to remember Alathays saying that if you can get them to do the infusion over 45 mins rather than 30 mins the side effects are easier to manage.

2 years - 《pah》

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

User

Posted 23 Jan 2018 at 16:56

Ironically I already had a dental appointment booked for today so urgent work to be done before this all starts. Any relief re walking will be great though just hope I can settle to it with few side effects.

User

Posted 23 Jan 2018 at 17:11

Best wishes, Paul. I'm fascinated with the increasing and effective dosage of dexamethasone you have been given. my own oncologist, when I taxed him about increasing the standard dosage of 0.5 mg, because it was obviously ineffective, said there was no evidence that a higher dose would be more effective. I thought at the time that this bloke plays it by the book (he is much less experienced than the guy I saw for my first nine years). My reaction, now, as Lyn would say "pah"!!

User

Posted 23 Jan 2018 at 17:54

Hi Paul,

Not to bad at all, nice to see at long last you are getting Zometa but i can not understand oncologists reluctance to give Denosumab yes it is more expensive but one is a simple injection and the other is an infusion, if they added the cost of nurses giving it then its a no brainer.

See you soon mate

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

User

Posted 23 Jan 2018 at 18:15

I did Si ask him about denosumab but it was his view it was more used for other cancers and this was his preferred one. It will be interesting to see it’s impact and hope the side effects are limited.

AC, dexamethosone has been effective for me whilst also helping me feel better. So I am happy to continue, it remains a low dose though.

User

Posted 25 Jan 2018 at 07:21

Paul,

Nice to see some steady progress.

I am on weekly Alendronic Acid for the bones and doing well on it.

All the best

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"

User

Posted 25 Jan 2018 at 12:04

Thanks Dave. I am hoping the side effects are minimal and that it helps. It feels like the onco is searching for a combination which could work for a while. I hope so, the alternative is reduced options on this uncertain journey.

User

Posted 25 Jan 2018 at 21:51

My little scooteraholic,

Great to hear from you as you might remember Trevor was on Zometa for around 3 years and had little or no side affects until the teeth issues . So yes get the dentist appointment first .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 25 Jan 2018 at 23:34

Thanks Julie. So lovely to hear from you. Well I hope there are few side effects and some positive difference as a result of it. We shall see. Be great to be scooting about this summer. I remain positive, it’s the only way!

User

Posted 30 Jan 2018 at 19:51

Oh good news in a way Paul, no one has offered John Zometa, but then he has had Radium 223.

We see the onco on 26th Feb and expect to start the chemo journey, even though we had said we didn’t want to go down that route. Our oncologist has said he doesn’t think further HT will work at the moment but hopes that chemo will kick start the HT again and maybe it will be available to us afterwards.

Funny to think of you on your scooter!

Beep beep.

Devonmaid

User

Posted 30 Jan 2018 at 20:06

Originally Posted by: Online Community Member

Funny to think of you on your scooter!

Beep beep.

You made me laugh! Paul scooting on his scooter with a camera, your John with his stick and a new dog, my John with 2 sticks and his binoculars - it's like 'Last of the Summer Wine' or Crossroads but I am not sure which :-/

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

User

Posted 31 Jan 2018 at 20:46

I just received the medical notes from my last meeting and onco confirms there that because there has been good clinical impact he would continue enzalutimide over the baseline, though is careful not to say how far. But I think zometa with the steroid increase is part of a package to try and hold the PSA so enzalutimide can continue to be prescribed.

The scooter helps so much though as the weather improves I hope to use it more and more. Its good for off roading so hoping to revisit some of my favourite walking places this summer.

I assume Allison radium 223 has not worked which is such a shame. Chemo and radium are my only options after enzalutimide so I follow your journey with much interest.

Edited by member 31 Jan 2018 at 20:46 | Reason: Not specified

User

Posted 31 Jan 2018 at 22:54

Enjoy the sunshine (when it arrives) trundling along on your chariot !!

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

User

Posted 31 Jan 2018 at 23:07

Really do hope you can get out and enjoy yourself as soon as the weather gets a bit warmer.

User

Posted 20 Feb 2018 at 15:58

Well latest appointment and the results are not too bad. My PSA has risen but not too much upto 12.96, now over the baseline, but enzalutimide treatment to continue for now. Have been offered radiotherapy if I want it in 3 weeks time if pain on the leg does not improve. I had terrible pain at the weekend and needed heavy duty painkillers to help but as before it has begun to recede. So appointment in three weeks for RT if I need it. Started my new Zometa infusion designed to strengthen my bones and ought to help the PSA but I go through all this again in four weeks time. Onco keen to see if combination can arrest PSA rises which remain small but unremitting. At some point I believe if no improvement emerges then may conclude enzalutimide days are numbered. I guess the leg pain confirms the cancer is active if somewhat uneveningly. So although I got a continuance it’s only for 4 weeks and uncertainties about the future remain,

User

Posted 20 Feb 2018 at 18:43

Glad to hear the pain is subsiding Paul. Is it worth requesting a scan before RT to make sure the leg pain is not something else.

Bri

User

Posted 20 Feb 2018 at 19:15

I have something in the back of my mind about bone pain when Zometa starts ... I hope it is something as simple as that. Worth looking back at Alathays' old posts perhaps?

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

User

Posted 20 Feb 2018 at 21:13

Bri I had a CT scan and they are pretty sure it’s the metatastes causing problems.

The zometa Lyn cannot have caused this pain as only started it today but I have read about bone pain after first infusion. Be just what I want after last weekend’s pain.

User

Posted 22 Feb 2018 at 14:04

Wow hope this was a one off. 24 hours after zometa infusion, tumour flare and fever-like symptoms. Been a rough 36 hours just beginning to get over it, I think.

User

Posted 22 Feb 2018 at 14:36

Stick with it Paul. I’m hoping things settle down for you !

User

Posted 22 Feb 2018 at 15:15

Sorry to read the latest Paul. Hope it all settles soon

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

User

Posted 20 Mar 2018 at 15:43

4 weeks on and time for an update. On Friday I had radiotherapy on my troublesome left leg pain and though it has been sore hopefully over the next few weeks it will help.

So today off to my oncologist and I can report that the cocktail of treatments to keep me on enzalutimide has had a glimmer of hope. My PSA has gone down by 0.07 to 12.79. In itself nothing special but it’s stopped it’s slow rise for the first time in 7/8 months and hopefully may start to go down. Oncologist confirmed that he is committed to keeping me on enzalutimide for the time being which feels very supportive. Also my ALP figure down to 129 so hopefully the zometa is helping.

So on to the second infusion of zometa and now home hoping I don’t have the bad reaction I did the first time.

Five hour stint today but despite feeling tired it feels a little bit of good news.

User

Posted 20 Mar 2018 at 15:55

That does seem good news Paul and long may it last. I did a five hour stint yesterday myself. Attending hospital flattens your mood mostly. Good luck with your fight

User

Posted 20 Mar 2018 at 16:34

Thanks Chris. On the five hour stint, it felt absolutely fine. When you think of the people involved in your care during that time from my oncologist through to the volunteer making cups of tea in the chemo suite people work so hard to make your time go well. So you take a book or in my case my iPad and get on with it. Same happened at radiotherapy on Thursday/Friday people caring about you. I certainly get my money’s worth from the NHS.

User

Posted 20 Mar 2018 at 18:40

Good to hear you had a positive consultation and outcome Paul.
Hoping you don’t have any adverse reaction to the Zometa

Bri

User

Posted 20 Mar 2018 at 18:42

Positive news Paul. Hopefully the pain in your left leg will subside over the next few weeks.

Best wishes, Ian,

Ido4

User

Posted 20 Mar 2018 at 18:49

Sounds good to me Paul

Your be ready for a beer soon

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

User

Posted 20 Mar 2018 at 20:43

Good news indeed x

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

User

Posted 21 Mar 2018 at 06:56

Good news Paul.

You are doing well

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"

User

Posted 21 Mar 2018 at 13:26

So woke up this morning after 12 hours sleep (admittedly in two hour shifts but that is normal for me) and no noticeable adverse side effects from the Zometa this time. Thus time 4 weeks ago I was stranded in bed feeling very ill but I was told this would lessen or disappear and it appears to have disappeared. Will take it careful for a few days but it’s encouraging. Just need to build up strength again. Good start to the day.

Thanks for all the best wishes.

User

Posted 22 Mar 2018 at 11:20

Good news Paul and resilient as ever. Take it easy.

Thanks Chris

User

Posted 22 Mar 2018 at 11:55

Well relieved Chris to have coped with the infusion, even left leg settling down. Maybe get a better few weeks now, about time.

User

Posted 22 Mar 2018 at 14:01

So pleased to read all the positives, Paul.

And no bad reaction to the infusion this time is brilliant news.

B2PCa

User

Posted 22 Mar 2018 at 22:26

Hope things continue to improve

User

Posted 23 Mar 2018 at 00:13

I hope that you do feel better - I see you have been doing a bit of conferencing this week? We are overdue a catch up and there is a particular piece of work I could do with your advice on - can I come and visit when John is up and about again?

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

User

Posted 23 Mar 2018 at 09:25

Lyn,

It would be great to see you whatever, so let me know I am at home quite often, let me know if you need more details, phone, address etc

User

Posted 01 Apr 2018 at 18:14

I blog on a regular basis but thought this blog might be of interest for some struggling with dying and death. Anyway be good to hear any thoughts.

https://yorkhull.wordpress.com/2018/04/01/you-start-dying-slowly/

Click here

Edited by member 01 Apr 2018 at 18:15 | Reason: Not specified

User

Posted 01 Apr 2018 at 22:35

I read your blog Paul.

I relate to so much of it. Since my diagnosis and recurrence I try to live my life as full as I can.

Reading, trying new things, travelling to new places, spending more time with my family and friends.

And trying to accept that I will die at some point. Probably a lot earlier than if it didn’t don’t ha e PC.

A friend and ex colleague of mine died in January aged 63, she had several heart attacks on 2/1/18. A stent was fitted to a blocked artery and a few days later she was sent home, elated that she had survived and ready to travel more, work less.

Unfortunately when she got home she sat in a chair and immediately had several more heart attacks from which she never recovered. At her funeral on 29/1 her son spoke of her saying to her husband “it’s time to stop working and enjoying life more”

People don’t realise the time to live is now, not when I reach this or that. You may never reach that point.

Much of the poem and what you say resonates with me.

Thank you for sharing your blog Paul.

Ian.

Ido4

User

Posted 01 Apr 2018 at 23:48

I always enjoy your writing, mostly because you seem to find reflection so easy while I have always had to work at it. Odd really since I teach other people to develop their reflective practice skills - a bit of 'do as I say, not as I do' I guess. Regardless, you continue to adapt to life rather than slowly die, it will soon be cricket season, and you are motorised :-) x

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

User

Posted 02 Apr 2018 at 19:07

Thanks Ian for your comments much appreciated.

And Lyn thanks I do think being reflective is a key tonsurvival, for me at last. When I can’t make sense of things life becomes more difficult but given time to reflect I can find a way through. I am getting stronger touch wood each day so beginning to look forward to warmer weather and some outings.

User

Posted 17 Apr 2018 at 14:49

So four weeks on further visit to onco. PSA Up again 14.23 which although slow rise is now well beyond the baseline figure. They are worried enzalutimide no longer working. So continuing for another 4 weeks whilst scans both CT and Bone are done to check if there is progression there. Already discussing radium 223 and chemo. Beginning to feel like another circle is disappearing.

I feel ok, pain level good my other tests were in general fine and ALP was 111. I am a bit anemic which concerned them as last time I was like thus was just before I started enzalutimide which is almost a year ago.

So cautious about the future, next options drawing closer but still hoping for a good run through the summer, one more time!

User

Posted 17 Apr 2018 at 17:37

Hi Paul

Glad to hear the pain is under control

Hope you can milk a few more months out of enzo we have spring and summer appearing very soon and nobody wants Chemo then

Good luck with the next test and scans

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

User

Posted 17 Apr 2018 at 18:03

Glad to hear the pain is under better control now Paul. A pity the PSA is still rising albeit slowly.

I hope you have a good summer before any new treatments.

Best wishes, Ian.

Ido4

User

Posted 17 Apr 2018 at 20:07

Paul

Sorry to hear the news is not better, got to admit I know nothing of all the drugs you guys talk about. Hope the scans show no more progression.

Take care.

Thanks Chris

User

Posted 17 Apr 2018 at 20:19

One more good summer, and one more memory trip with the kids, then one more Christmas - I hope the one mores just keep coming, my friend x

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

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