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Ever Decreasing Circles part three

User
Posted 14 December 2017 22:31:32(UTC)
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
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User
Posted 15 December 2017 18:35:28(UTC)

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 January 2018 11:28:44(UTC)

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.

Thanked 9 times
User
Posted 23 January 2018 14:45:09(UTC)

Very optimistic Paul.

Good luck and Best Wishes

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 23 January 2018 15:22:20(UTC)
Thanks for the update Paul. Best wishes, Ian.
User
Posted 23 January 2018 16:41:21(UTC)

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 January 2018 16:56:49(UTC)

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 January 2018 17:11:02(UTC)

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"!!

AC

User
Posted 23 January 2018 17:54:36(UTC)

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

 

Si 

Don't deny the diagnosis; try to defy the verdict
User
Posted 23 January 2018 18:15:23(UTC)

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 January 2018 07:21:02(UTC)

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 January 2018 12:04:34(UTC)

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 January 2018 21:51:56(UTC)
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
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User
Posted 25 January 2018 23:34:44(UTC)

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 January 2018 19:51:39(UTC)
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
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User
Posted 30 January 2018 20:06:08(UTC)

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


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User
Posted 31 January 2018 20:46:21(UTC)

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.

User
Posted 31 January 2018 22:54:12(UTC)

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

We can't control the winds - but we can adjust our sails
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User
Posted 31 January 2018 23:07:51(UTC)

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

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