The million dollar question

User

Posted 27 Nov 2024 at 12:07

Hi phil

Had targeted radiotherapy about a month ago on one of my ribs close to my spine,it was not a big dose and was classed as preventative radiotherapy,it flared up like hell a few days after but lapsed about a week after,touch wood it's kept it away for now.

Images of my pet scan last week were unable to view and the right up of the scan was on the computer screen and I was told by my oncologist to take a "SCREEN SHOT" which I found disgusting and unprofessional!! I keep meaning to change my oncologist but I never do....it's a better the devil you know thing.so I can't comment on my spread.

I wish you well Phil....keep fighting

User

Posted 27 Nov 2024 at 16:56

Hi Phil. That’s good to know the rib radiotherapy worked ok. I might need it soon … 😳…

Absolutely awful that your Pet scan wasn’t very clear. Have they booked another scan yet ? And as for saying take a screen shot 😳🥴… Hope you get that sorted asap.

I am really lucky with my Oncologist and the hospital in general. Had a couple of issues of lack of information with all departments but I think resolved now. My Palliative Nurse has been brilliant . Very knowledgeable and gets things done. I owe her for getting me healthy again after the chemo knocked 7 bells out of me.

Yep, keep on fighting 👍, you too buddy . Too much to do yet 🏖️✈️🚢 ⚽️🍷🍺 🥘 🤣🤣

It’s our 42nd Wedding Anniversary today so as we’re out Saturday night we’re having a takeaway tonight.

Take care

Phil

Edited by member 27 Nov 2024 at 16:57 | Reason: Not specified

User

Posted 29 Nov 2024 at 12:29

Hi guys

Had the figures come through for treatment costs of 177,give or take it is £14,500 per cycle,with a PSA pet scan(extra cost) given after 2 cycles,just waiting to see if I'm eligible for treatment then an online consultation (which is free!! Yippee)in the next few weeks.

Will keep you updated regards Phil

User

Posted 29 Nov 2024 at 13:30

Best of luck Phil, with the consultation . Outrageous cost though. How can the manufacturer warrant that, and it not be available on NHS.

If you do go for it then do consider the crowd funding. 👍

Phil

User

Posted 29 Nov 2024 at 17:15

Crikey Phil that’s a lot of dosh. I’d have to weigh it up having a young son. I’d want to know figures on efficacy. But then I’m not in your shoes yet and haven’t walked in them. Just sending wishes and strength and a man hug 🤗

User

Posted 29 Nov 2024 at 23:36

Originally Posted by: Online Community Member

... an online consultation (which is free!! Yippee)...

Careful, you might find it's a timeshare salesman.😂

Dave

User

Posted 30 Nov 2024 at 05:44

Both Phils and Chris J. You are amongst my Cancer fighting Supermen You've got super powers which I doubt I'll ever have. Keep battling on boys!

User

Posted 18 Dec 2024 at 12:51

Hi all

Update time ..had zoom call today with Royal Marsden hospital in London for self funded letethium 177 treatment,it was a catch 22,basically my cancer spread wasn't enough to justify the cost of having it yet but maybe in the future the option is there.(Hopefully the treatment will be available free on the NHS then)Will wait now until 8th January for face to face appointment at the same hospital to see if I'm eligible for clinical trials where decisions will have to made which path I'm taking.

Will update then,regards Phil

User

Posted 18 Dec 2024 at 13:35

Hey Phil , try and have an epic Xmas buddy. Eat and drink what you want , enjoy the family , and then look forwards to the next one. In my thoughts ok

User

Posted 18 Dec 2024 at 13:44

Hi Phil, I'm with ChrisJ, Have yourselves a Christmas to remember. Thinking of you and wishing you all the luck in the world

User

Posted 18 Dec 2024 at 14:13

Hi Phil.

I suppose the fact that your cancer hasn’t spread enough to warrant the Lutetium is actually a tiny bit of good news…

Let’s actually hope that it doesn’t spread much or at all for a while. My consultant yesterday said the chemo does carry on working for quite a while after it is stopped.

Obviously wishing you the best of luck in January, but in the meantime have a most brilliant holiday in the Canaries. Do your best to forget all about the nasty stuff in your body and enjoy yourselves.

Cheers

Phil

User

Posted 19 Dec 2024 at 09:25

Hi all

Thanks for your messages guys,I'll certainly try my best next week and and because I'll be away I'd like to wish you all a merry Xmas and have the best day you can.

Best wishes Phil

User

Posted 19 Dec 2024 at 20:23

where are you going mate?

User

Posted 20 Dec 2024 at 08:34

Hiya Paul0

Lanzarote over Xmas....charge me batteries with a bit of sun ready for the months ahead.

User

Posted 20 Dec 2024 at 15:11

is right mate, bit of sun (hopefully) can't do any harm!

User

Posted 07 Jan 2025 at 10:35

Hi Phil. Hope you had a magic holiday and are feeling a little better after some sun ☀️

Not the nicest of weathers to come home to at the moment… 🥶

Hope the appointment goes as well as it can tomorrow. Thinking of you 👍

Phil

User

Posted 07 Jan 2025 at 21:45

Hi Phil

Had a great time and yes it's a bit chillllly..

Travelled down to London today to stop over night and had a dummy run to royal Marsden which is less than 10 mins away ready for appointment and tests at 1:30 tomorrow.

Let's see what there offering on the clinical trials,will update with results.

Hope you are keeping well Phil

Cheers

User

Posted 09 Jan 2025 at 09:47

Hi all it's update time I'll try and keep it short.

Had interview at Royal Marsden in London yesterday for possibility of going on clinical trials,I had a ECG and blood tests which all come back good,there are many trials available some phase 1,2 and 3.

You really felt that they were interested in your condition and they wanted to look after you I was in the consultants room for nearly an hour,I'm being booked in for a scan and more blood tests in a few weeks,when I'll be told if I've been accepted talk through and choose a trial and sign consent forms.

It is a round trip journey of 300 miles for me and the wife but we stay overnight and once the trials begin you can claim expenses,it was a long journey back in the dark last night on the M25,M40,M42 and M5 but it is what it is and you do what you have to do.

Will keep you updated as always

Regards Phil

User

Posted 09 Jan 2025 at 10:00

Hi Phil.

Sounds like a really encouraging meeting. Interesting there are a few trials going on, be good to hear about them when you go back.

Hope you are still feeling ok physically and mentally ? Keep doing the stuff you enjoy.

I went back to my Badminton old cronies session yesterday after a break of over 6 months. It was great seeing everyone again and I played quite a few games. Just careful i didn’t overdo it and watchful of my footing due to the Neuropathy in my feet. Didn’t want a fall and break a bone 🤦🏼…

Take care Phil,

Phil

User

Posted 09 Jan 2025 at 10:13

Hi Phil

That's good to hear....I thought I was up to speed with treatment but the names of stuff that's about at moment is over my head,one trial was when it grabs hold over a cancer cell and your immune system and binds it together!!! I forget the name of it...mind boggling.

Phil

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.

User

Posted 06 Feb 2025 at 09:09

Hi guys

Just a quickie...at Royal Marsden as I'm typing,waiting for tests and conversations and to sign consent forms for trail,will update when I know more.

Regards Phil

User

Posted 06 Feb 2025 at 09:33

Best of luck Phil. Hope it all goes as well as it can.

Phil

User

Posted 06 Feb 2025 at 14:16

Gunning for you fella as always 💪

User

Posted 17 Feb 2025 at 10:06

Hi Phil.

Just to let you know I’m thinking of you . Hope you got the trial sorted out ?

If you’re not up to replying that’s fine , I understand fully. Just wanted you to know we’re all rooting for you.

Phil

User

Posted 17 Feb 2025 at 11:06

Hi Phil

Thanks for the message,PSA now upto 233,last few weeks have been up and down with pain in back,today isn't to bad but never know what tomorrow brings.

Will find out what arm of the Amagen trial I'll be in this week(Amagen being the US company who is sponsoring the trial) either cabizitaxel (treatment arm) or Xaluritamig (experimental arm) no matter which one it is treatment will start a week tomorrow.

Will update when I know more,all the best Phil.

User

Posted 17 Feb 2025 at 11:30

Best of luck Phil. Really hope whichever arm you’re on it will make a difference.

Sorry to hear your PSA is still going up . I’ll find out mine tomorrow 😬. What a shitty journey this is.

My palliative nurse started me on regular paracetamol for the back pain. So I’m taking them 4 times a day, or trying to remember to…

Thoughts are with you buddy.

Phil

User

Posted 19 Feb 2025 at 14:38

Hi guys

Had the phone call this afternoon telling me which arm of the trial I'll be starting on next week,it's the treatment arm which is normal standard of care cabizitaxel,not really the result I wanted as I could have started on that treatment round the corner at my local hospital a few months ago rather than a hospital 150 miles away,I had a 1 in 3 chance of falling into the this arm!!seems like just my luck.

Oh well I suppose it's treatment at the end of the day.

All the best Phil

User

Posted 19 Feb 2025 at 14:50

Hi Phil.

oh it’s a shame you’re on the Cabaxitaxel and not the trial drug. I would feel the same. But saying that Cabazitaxel is a well proven drug and fingers crossed it helps out.

Bit of a pain that you’ve got to travel for it now. Can you ask if you can have it near where you live and they can still see the results ?

Got everything crossed for you Phil. 👍

Phil

User

Posted 19 Feb 2025 at 21:42

Hi Phil, l'm gutted for you, but as you say it's treatment hope you cope with cabazitaxel, thinking of you and best of luck with the travelling
Wendy n Dave

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The million dollar question

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