"The road ahead"!

User

Posted 27 Jun 2018 at 06:33

IDO4. Thanks for ur comments. Wouldn’t wish pca on anyone but after last weeks run of Pars, yesterday I scored 45 pts in a club comp (came 2nd!!), thus reducing my handicap by a further 2 shots!! So that a 3 shot reduction in two weeks. No banditry here then!!😂

off for my annual diabetes clinic later but with my blood marker being 42 with <48 ok, I’m hoping it will just be more monitoring and no tablets today.

User

Posted 09 Jul 2018 at 14:20

Ok, just back from a meeting with my onco and as my scans indicate no additional activity in my bones, (ie. a stable reading), then she’s pushing me on for a further 4 Cabazitaxel infusions (taking it up to 10 sessions). In an effort to bring my PSA down a bit more, currently 552.

It then looks as if I ll be going to Bristol once a month for 6 sessions of Radium 223. Which again targets bone activity, and when you consider that todate I’ve had all my current treatments within 6 miles of home ain’t too bad is it?

So if anyone out there has experience of Radium 223 treatment I love to hear your comments on same.

As I’ll need to go over the “Bridge” to get to Bristol do I need to take a tank filled with Welsh air with me!,! 😂😜

User

Posted 09 Jul 2018 at 15:55

Thank you for the update Valleyboy - I always read your posts with interest and wish you the very best with your ongoing treatment.

User

Posted 10 Jul 2018 at 23:21

Oh Valley boy just another lad that I keep an eye on 😉

Trevor had all 6 treaments of radium 223 so ask away

xxx

NEVER LAUGH AT A LIVE DRAGON

User

Posted 11 Jul 2018 at 17:48

Thanks. Just had chemo2/7 Cabazitaxel, and as usual all ok and completed in approx 3 hours. just took another look at Trevor’s bio, and whilst it seems he coped ok with the radium treatment, he obviously had so many other things going on that they eventually combined to take him away. Still makes me sad thinking about it, but when you consider he started with PSA at app 13000, what am I moaning about 1547!😂

so if you do feel up to it (and don’t worry if you don’t), would you still recommend Radium 223 As a treatment option? and what benefits if any did it give Trevor?

ps.

as I’ve already had Docetaxel and on Cabazitaxel chemo at the moment, (plus lifetime hormone injections), and as at the moment I’m still relatively healthy, still playing golf, walking, gardening etc. I m obviously going to take my oncos advise and take the radium. And then I’m still hoping there’s also a few other treatments in the “box” following this!

stay strong x 👍

User

Posted 12 Jul 2018 at 10:50

Always good to follow your progress Valleyboy, and good to see you are still relatively healthly which is great news.

I think I picked up a query on another thread which you raised as to further treatments.

I am no expert by any means and I'm sure Lyn or some of the other posters would know more about it than me, but my Onco has repeated that the following treatments still remain on the tablle. So in no partucular order they are:

Cabazitaxel

Mitoxantrone

Zytiga / Abiraterone

Enzalutamide / Xtandi

Immunotherapy drugs

My very best wishes to you Valleyboy

Regards

Dave

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

User

Posted 26 Jul 2018 at 22:44

Well it looks like I’m moving on to another treatment plan—Radium 223.

Had a phone call today from both my onco’s specialist nurse here in Wales, and the radiography section in the Bristol Royal Infirmary stating that I’m due to start a course of 6 infusions, (1 per month ), from 10th August. So that’s no more chemo for me (at the moment), just completed 7 of 10 Cabazitaxel infusions but my PSA remains high at 542.

Also they’ve agreed that I can have my bloods and a clinic visit about 10 days before each infusion here in West Wales. Which means I only need to travel to Bristol once a month which is great. Evidently Treatment will take about one hour from arrival to discharge, so it’s also much quicker than a chemo infusion?

Done a bit of background reading about Radium 223 and it seems as if my PSA Reading will not be as important a marker on this treatment as my general health and well being combined with bone pain relief. However, as I explained to Bristol this afternoon, to be fair at the moment my bone pain is minimal, and I’ve been painting, strimming and trimming bushes today!! With Golf planned for tmos and Saturday!

So as I embark on yet another treatment journey I ll endeavour to keep you all up to speed on my progress over the next 6 months.

Keep the Faith

User

Posted 26 Jul 2018 at 22:53

Just back from check- up at Marsden for trial that I am on. Good chat with doc. It’s inspiring what they have coming in terms of new treatment approaches. Definitely keep the faith!

User

Posted 26 Jul 2018 at 23:01

Dark Warrior. Thanks for that, but I wonder when you’ve got 5 mins could you expand on your comment “re new treatment approaches”, ie. what are they?

Thanks from a Celtic Warrior!!

User

Posted 26 Jul 2018 at 23:10

Glad to see you are moving on to your next treatment plan and you remain active and in relatively good health.

I certainly couldn't be as active as you in this heat. That is for sure.

I look forward to following you on your latest journey

Regards

Dave

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

User

Posted 26 Jul 2018 at 23:22

I've been looking for ages for someone to trim my bushes :-/

Sorry to see that your PSA has remained high but some on here have had great results with Radium 223 and less travel will be a blessing. Fingers crossed for you.

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

User

Posted 27 Jul 2018 at 06:26

Thanks LynEyre
Yes it’s a shame about my PSA No’s but as the best I’ve managed so far is 94? (Originally 1547), i suppose I’ve just got to go with the flow and listen to my body? Which at the moment says everything’s fine (with no undue aches or pains),. So even tho there’s obviously a lot going on inside (with such extensive mets etc), whilst I’m coping well I ll just get on with it and hope it lasts as long as possible, and that the Radium knocks a few of the blighters off my bones!?!
Yes the reduced travelling will be a godsend as it’s 116 miles each way to Bristol, so again I must thank both Health Authorities for co operating in my case and once again I praise the NHS for the service it’s giving me. As I’ve only been to Bristol once so far for a clinic/consultation visit, but just as with my local oncology unit everyone I met there couldn’t have made me feel more welcome.
ps. Trim ur own bushes it will do you good!?!😂

keep th Faith

Edited by member 27 Jul 2018 at 06:30 | Reason: Not specified

User

Posted 27 Jul 2018 at 08:38

Dear ValleyBoy, See my thread “Medical science, progress and hope” where I post interesting new stuff. They are also keen on the PSMA targeted approaches.

Edited by member 27 Jul 2018 at 08:57 | Reason: Not specified

User

Posted 27 Jul 2018 at 09:12

Dark Warrior

sorry for being a bit “thick” but how do I get into that thread?

Thanks

User

Posted 27 Jul 2018 at 10:11

You can find it under Treatment/advanced and metastatic, Good luck with everything!

User

Posted 27 Jul 2018 at 10:35

Here it is Valleyboy

https://community.prostatecanceruk.org/posts/t15782-Medical-science--progress--and-hope

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

User

Posted 10 Aug 2018 at 19:55

Ok. Back from Bristol where I’ve just been given my first infusion of Radium 223 and at the moment I feel fine. No undue side effects, although I ve been told to keep an eye out for the more common side effects, eg. Sickness/diarerraha, increased bone pain over next 48 hours and how to cope with these. Also given a comprehensive briefing on what Ra223 does and what it doesn’t do? And a print out of my blood work from July which indicate that whilst my PSA has gone back up to 588, (and Ra223 treatment will not hit this), my ALP has decreased again to 135 which is only 5 points above “normal” and Ra223 may hit this further? So all in all I’m feeling fairly optimistic at the moment and look forward to my next infusion on the 7th Sept.

Just like to mention that I couldn’t have been given a warmer and more professional welcome by all the staff in Bristol Oncology unit, proving that the NHS treatment I’m receiving in both Carmarthen and Bristol is second to none. Well done to all concerned.

ps. Golf already planned for tmos morning, followed by Swansea’s 1st home game in the Championship at 3pm. 🙈😂

User

Posted 10 Aug 2018 at 20:54

Siwmae Valleyboy and good luck with this treatment. Not had it myself (yet) but all the medics I have spoken to are enthusiastic about it.

User

Posted 10 Aug 2018 at 22:11

You sound quite positive Valleyboy. Keep golfing. I am too!

wishing you all the best.

Ian

Ido4

User

Posted 11 Aug 2018 at 09:36

Keep up the good fight Valleyboy they seem to be giving you some good treatment sound good apart from the traveling must be very tiring for you with all that treatment.

Good luck for the future.

John.

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