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The million dollar question

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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 😳πŸ₯΄… 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 πŸ‘, you too buddy . Too much to do yet πŸ–οΈβœˆοΈπŸš’ ⚽️🍷🍺 πŸ₯˜ 🀣🀣

 

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. πŸ‘

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 πŸ€—
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.πŸ˜‚

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 β˜€οΈ 

Not the nicest of weathers to come home to at the moment… πŸ₯Ά

Hope the appointment goes as well as it can tomorrow. Thinking of you πŸ‘

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

 
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