"The road ahead"!

User

Posted 25 Sep 2018 at 22:39

If it’s applicable to a particular patient, that is if the scan shows that the tumour cells are expressing the PSMA molecule (as most do) then the treatment should work on mets that are in the bones or anywhere else. That’s the beauty of it.

User

Posted 25 Sep 2018 at 22:46

Sandy

Yes, allegedly it works well for bone mets with some patients getting impressive results, but it also works for other areas of spread too.

As/when the time comes I ll keep everyone informed re progress with this treatment option. However as I’ve still got a few other options left following my current Ra223 eg. Firstly another treatment holiday, followed by Aberaterone or Enzalutamide, hopefully it will be a while before I go down the 225 route, as in lots of literature about it it’s classed as end-stage treatment! And I ain’t ready for that yet??🤪

User

Posted 26 Sep 2018 at 00:31

Hopefully it will be a long while before you need to think about Ac-225 - they may have brought out a cheaper Porsche by then

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

User

Posted 11 Oct 2018 at 18:20

Ok been busy for the last week or so preparing for my partners daughters 40th birthday party, so forgot to update you all on my 3rd Radium 223 treatment last Week. Well as normal everything went ok, with the staff at the oncology unit in Bristol giving me my infusion in their usual professional manner.

No side effects to date, still golfing, walking, and gardening as required, and I’ve even had my 3 monthly Prostap/3 and flu injections on Monday of this week without any issues too.

Doing fine re-bloods at the moment, so let’s hope that continues so I can go for my 4th infusion during the 1st week of November. As mentioned previously I’m hoping that at my next blood test my ALP will have dropped yet again taking me back into the “normal” range?? Thus vindicating the Ra223 treatment option. And I ll update you all accordingly after the 19th.

Keep the Faith

User

Posted 11 Oct 2018 at 19:11

Thanks for the update J.

After 3 years of needles you would think the flu jab was a doddle, don't know about you but it was a wee bit sore haha.

Keep golfing mate.

Cheers

Sandy

User

Posted 19 Oct 2018 at 16:52

Bloods update——although my current treatment plan is not supposed to affect PSA levels, following this test my PSA is down a further 35pts to 367. Whilst my alkaline phosphate (bone marker) is down 21 to 112 which is back within the normal range for the first time in 20 months.

Some of my red blood cell markers are a bit high but I ll clarify what that means in my video conference meeting with the oncology stafff in Bristol on Monday. Still feeling fine, So if all’s well it’s off the Bristol on the 2nd November for my 4th Radium 223 infusion. Further updates to follow in November.

Keep the Faith

User

Posted 19 Oct 2018 at 17:56

Good results! Very glad for you.

User

Posted 01 Nov 2018 at 15:11

Just back from Bristol after 4th infusion of Radium 223. No issues, all going well, with as stated previously ALP back in the normal range’.

Next bloods and video conference due 19th Nov. So Hopefully ALP and PSA will continue to drop by then and I ll update you all following that.

Keep the Faith

User

Posted 03 Nov 2018 at 12:31

Hi I’m a new member joining the group also

also a valley boy now living in west wales

diagnosis advanced PC localised spread PSA

11.8 started hormone treatment and been offered chemotherapy problem

as I have crohns I have to make a choice it’s been inspiring to read your

posts in truth I’m struggling oh well hear goes Rob

User

Posted 03 Nov 2018 at 12:49

Hi Valleyboy,

Wishing you well keep up the good fight must be tiring all that traveling to Bristol for treatment

regards John.

User

Posted 03 Nov 2018 at 13:23

Thebear

Rhymney valleyboy me so Hang on in there, sorry don’t know enough about Crohns to offer any advice re-chemo or not. Except to say that I’ve had 13 infusions without many problems and I’ve got extensive mets. spread.

However as you ll hear many times on this forum we re all individuals and all cope with things differently. So speak with your consultant and if you both feel it’s right for you go for it. Try not to fret too much, as I too have down days, but you’ve got to keep on top of it as much as you can, and I’m a firm believer in PMA—positive mental attitude. Which definetly helps me cope with the day to day pressures of APca.

John

Thanks for your comment, travelling not too bad as one of my friends from golf drives!! Also I’ve got a few other drivers from the golf and rugby club in reserve so if I fancy a kip on the way back so be it!

Also been really lucky with the traffic so far, no hold ups on way to or back from Bristol 4 times so far, so door to door in app. 2 hours.

Loads of parking within minutes of the hospital so no issues there either. Staff brilliant too even tho they are from the wrong side of Offas Dyke!😂

User

Posted 03 Nov 2018 at 15:21

Hi valley boy

coincidence i‘m from the rhymney valley

also YM it’s a small world I wish you all the best

with your treatment I hope I’ve got some

of your spirit

User

Posted 03 Nov 2018 at 15:51

Ystrad Mynach? That’s almost the flat part of the valley isn’t it? 😂And as it’s now known “satellite city” for Kerrdiff!!

You have got the spirit just gotta release it. Loads of treatment options out there with more coming on line all the time.

As/when/if required, I’m even considering treatments in Australialia, South Africa or Germany?

Keep the Faith

User

Posted 03 Nov 2018 at 17:40

Thanks for the support yes YM is the flat bit

onward and upwards!!

User

Posted 15 Nov 2018 at 18:50

Meeting with oncologist today to discuss bloods and general health prior to Radium 223 5th treatment at end of month. Good news with ALP down to 95, (normal range 30-130). And PSA down another 30 pts. With all other bloods holding up well. So all systems go for last but one treatment at end of month. Also obtained a copy of my initial bone scan in February 2017 where I’m lit up like an Xmas tree with mets all over spine,ribs,pelvis and skull. Can’t wait till Feb 19 to see what they look like now as ALP was 287 in 2017 now 95 so hopefully that translates into smaller/less Met sites? I ll update again following treatment at end of month.
Keep the Faith
J.

Edited by member 16 Nov 2018 at 06:51 | Reason: Not specified

User

Posted 19 Nov 2018 at 15:32

Just had phone call from Bristol. Bloods all ok for this Thursday’s Radium 223 x 5 infusion. However Decembers bloods need to be taken earlier in the month in order for the Radium to be ordered from Norway in time for Xmas!! Well I’ve heard of Xmas trees from Norway but looks like Santa’s bringing me Radium this year too??😂

User

Posted 19 Nov 2018 at 15:51

I hope you’re not selfishly starting World War Three on your own!

Look what happened when radioactivity and Norway combined last time:

https://en.m.wikipedia.org/wiki/Norwegian_heavy_water_sabotage

Cheers John 😉

Edited by member 19 Nov 2018 at 15:55 | Reason: Not specified

User

Posted 19 Nov 2018 at 16:31

Thanks John. Good link. I also notice that Richard Harris played a character by the name of “Knut Straud” in the film Hero’s of Telemark. So as I’m currently full of my own version of “Heavy water” I may ask play him in any remake??😂

User

Posted 30 Nov 2018 at 08:01

Ok. Had radium 223 infusion No 5 of 6 yesterday and so far so good. Bloods still all good and as stated previously ALP back in the “normal” range, so nurses in Bristol happy with that too. Last infusion due 27/12. So unless anything else crops up I’ll update again after next bloods on 14/12.

Keep the Faith.

Seasons greetings to one and all

User

Posted 30 Nov 2018 at 09:15

Glad to hear the Radium 223 treatment has gone smoothly and you are coping well with it.

Ian

Ido4

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