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The million dollar question

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User

Posted 09 Jan 2025 at 20:10

Yes Phil!

Sounds really positive that

User

Posted 10 Jan 2025 at 19:08

Hi Phil

Great to see you are pursuing trials, I also researched the trip to London from Lancashire when I thought lu 177 might have been an option for my husband Allan.

I will keep my eye on your progress.

Allan's funeral was 16 December, donations for Prostate Cancer UK came to 800 pounds, I was so pleased to post that to them today.

Good luck

Melissa x

Mrs MAS

User

Posted 10 Jan 2025 at 23:00

thinking of you all the best with the next round of tests, take care

User

Posted 13 Jan 2025 at 10:53

Hi Phil.

Sounds good that they are going to be starting fairly soon. Haven’t heard much about any trials going on so be interested to hear what info you get. I got my consultant letter at the weekend and it says i have another vertebrae involvement. Number L3 which is lower lumber and my already existing T10. But luckily still no pain from them. Only having a blood test before my next consultation so presumably they’ll still be watching my PSA and take it from there. Fingers crossed it hasn’t risen much and i can avoid any more treatment for another couple of months…

Hi Melissa

So sorry to hear your husband Allan has passed away. I just read your post and it must have been hard that he went so quickly after the cancer spread to his lungs. How lovely you raised some money for the PCa charity.

Take care all,

Phil

User

Posted 13 Jan 2025 at 15:52

Hi Melissa

So glad to hear you raised a great amount of money for something so important,also thanks for your support.

Hi Phil

Sorry to hear you have further spread but keep the faith as long as your feeling well take strength from that and like the experts told me at Royal Marsden don't get hooked at numbers when it comes to your PSA it is only an indicator.

I've been invited (test results being positive on 29th January) to take part in a phase III Amgen trial called Xaluritamig,it's a type of an immunotherapy drug, I'll be going for it if test results are accepted.

Will keep you updated regards Phil

User

Posted 13 Jan 2025 at 17:28

Hi Phil.

That sounds really interesting , immunotherapy seems to be the way forward. I looked it up and not sure if they’d accept me as I’ve had Abiraterone and it didn’t work. Can’t remember what you tried before chemo.

Do you get to choose if you go on the immunotherapy drug or do they choose ?

Bet you just want to get started now …

Had my Degarelix today and tummy already painful . Also had a chat with the palliative care team.

Take care,

Phil

User

Posted 23 Jan 2025 at 09:30

Hi all

Little update....blood test result in from 9th January, wasn't going to open the e/mail but I did....PSA now 162 ! Been told by specialists not to get hooked on numbers but it still knocked me back a bit...Hoping to start trial in next 2/3 weeks,it can't come quick enough.

Best wishes all and stay strong

User

Posted 23 Jan 2025 at 09:41

And here’s me worrying that my husband’s PSA has gone up to 8!!! Good luck when the new trial starts, it’s a constant worry

best wishes

Ann

User

Posted 23 Jan 2025 at 10:50

Hi Phil.

Really sorry to hear your latest PSA has risen again. I have everything crossed you get started on the trial very soon. I’ve read up on it and it sounds interesting with very good results. Let’s hope it does the trick.

Do you have to go down to London every 4 weeks ? And how many sessions are they saying?

Best of luck buddy . Keep us posted if you are able and feel like it.

Cheers

Phil

User

Posted 23 Jan 2025 at 11:27

Phil,

Its disheartening waiting for the psa result, keeping hopeful and then find it's an increase.

I'm thinking of you, and praying your trial starts as soon as possible. I'll be following your progress.

Fingers crossed for you x

Mrs MAS

User

Posted 23 Jan 2025 at 11:42

Wishing you all the best Phil. Fingers crossed 🤞 for you !

User

Posted 24 Jan 2025 at 09:29

Phil, how far is Chasetown from you?

My football club (City of Liverpool FC) is playing there tomorrow and if it's close enough and you feel up to it, it'd be great to meet up and share some war stories!!!

But don't worry if not.

PS Weather permitting!

User

Posted 24 Jan 2025 at 10:03

Hi all

Thanks for your responses.

If accepted and put on trial and put on the experimental arm not the control arm (I'll find out next Wednesday) I will have to travel to London once a week for the first month and every 2 weeks thereafter for upto 3 years if treatment works and I tolerate it.

Chasetown (burntwood)? Not that far but I'm busy busy busy..having to arrange a lot of things,but thanks so much for offering

User

Posted 24 Jan 2025 at 10:28

Hi Phil.

Can you ask to go on the experimental arm? I don’t suppose you can but presume they might tell you which you’re on?

That is a lot of journeys down to London. Interesting they are planning on 3 years of treatment. Wonder if at any time they’ll start to do that trial elsewhere.

Cheers

Phil

User

Posted 24 Jan 2025 at 10:45

Hi Phil

Unfortunately not,on the paperwork I was given there's around 650 men going on it worldwide with around 28 coming from the UK,two thirds will go on the experimental arm and the other the control arm(e.g cabizitaxel)

User

Posted 24 Jan 2025 at 11:00

Oh that’s a bummer. I do understand it but I’d still like to wheedle my way onto the experimental arm. Mind you it’s possible Cabazitaxel will work as well. It’s a well proven drug .

Good luck

Phil

User

Posted 24 Jan 2025 at 11:54

Hoping that you chosen for the experimental arm, everything is crossed, good luck you deserve some luck, Phil

Edited by member 24 Jan 2025 at 11:54 | Reason: Not specified

User

Posted 24 Jan 2025 at 12:49

no problem mate

User

Posted 06 Feb 2025 at 08:42

Just jumping in with a quick comment on how bloody amazing everyone is; Phil, and well, everyone. Reading this whole tread is inspirational really - we all need to keep going, keep looking for options, keep being positive.

I'm part of this PC club, only 18 months in after my advanced diagnosis (PSA of 91, lymph involvement, widespread bone mets) and after chemo and RT my hormone therapy continues to do the job, PSA now down to 0.95.

But... I know that it's a (hopefully) long and difficult journey with ups and downs, and it's heartening to read about all the fighters on here!

All the best with the clinical trial, I've been up to UCL Hospital to ask, but most trials are for castration resistant patients, but every month/year that passes, better treatments emerge.

Keep on fighting the good fight 💪

User

Posted 06 Feb 2025 at 09:01

Originally Posted by: Online Community Member

Hi Brightonbiker.

Hello mate and welcome to the forum.

I've read your profile and added you to my cancer heroes list. You lads leave me lost for words. Best of luck to you all.

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