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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

User

Posted 28 Feb 2025 at 09:35

Hi all

Update time...Started 1st cycle of Cabizitaxel at the the Royal Marsden Sutton a couple of days ago with a max of 10 cycles arranged,as I've mentioned earlier because I've been assigned in the treatment arm of the trial.

I was in 2 minds to pull out of the trial because of the travelling (300 mile round trip)but the pros out wayed the cons and I'm going on that more trial options will be offered to me once the time arises.

2 days after infusion on the first cycle is a bit earlier to say how side effects are going but at mo no real change just a bit hyper due to steroids being prescribed.

I have found that being on a trail you are more how to say looked after, regular tests more time given to you always someone answering on the end of the phone,those kinda things.

Will as always keep you updated all the best everyone Phil.

User

Posted 28 Feb 2025 at 09:39

Keep strong Phil. You are in inspiration to us all, mate.

User

Posted 28 Feb 2025 at 09:49

Hi Phil thanks for the update sounds like they're looking after you like royalty, Take care and get plenty of rest between travelling, cheers daveh

User

Posted 19 Mar 2025 at 07:32

Hi all

Little update...Single kidney stent fitted yesterday with nephrostomy at the Royal Marsden Chelsea had to leave house at 4am for a 9am appointment,had overnight stay and hoping to have nephrostomy removed today and let home,had to postpone 2nd round of cabizitaxel until next week I felt I couldn't cope with 3 nights in London and chemo,still coping physically but I'm getting no younger and putting on weight.

Will keep you updated as always,Phil

User

Posted 19 Mar 2025 at 07:51

Phil, some said the other day ,it's the disease that keeps giving, hope things start to improve soon.

Thanks Chris

User

Posted 19 Mar 2025 at 08:25

Hi Phil, I had to Google that. Hope it all goes smoothly and that you're back home soon.

Good luck,

Kev.

User

Posted 19 Mar 2025 at 09:49

Hi Phil. Why can’t stuff go smoothly for once. What have we done to deserve this ?

Shame you’ve got to come back down again next week for the cabazitaxel. But you know your own body and what you can take .

Hope the nephrostomy can be removed today and you can get back home to recuperate.

Take care buddy,

thinking of you 👍

Phil

User

Posted 19 Mar 2025 at 11:36

Hi Phil, we're thinking of you just rest as much as you can, once this is sorted hopefully it will be easier going from then, take care
Good luck DaveH

Edited by member 19 Mar 2025 at 11:36 | Reason: Not specified

User

Posted 21 Mar 2025 at 08:02

Hi all

Well kidney stent has been in a couple of days and hopefully settling in to it's new home,was booked in to have 2 fitted(as per consultants instructions) but only had right side fitted as the radiologist did not warrant the left stent to be inserted...who am I to argue with that...still peeing a little blood but drinking plenty of water to keep flushing it through,pain wise it's varys from visit to visit to the loo but it's bearable.

2nd chemo which was postponed a week due to stent being fitted booked in for next Thursday so will update after that.

Take care guys Phil

User

Posted 28 Mar 2025 at 08:16

Hi all

Day after 2nd dose of Cabizitaxel after postponing a week due to kidney stent insertion,Rosey cheeks,slight metal mouth and still effects of intravenous steroids but coping for now.

Kidney stent now settled in and managing.

Will keep updated as always....keep the faith all and make that effort to get out of bed.

All the best Phil

User

Posted 28 Mar 2025 at 08:28

Hi Phil,

You are doing great! Really hoping the cabazitaxel does it's job for you and as you say by accessing it this way there may be other options available to you going forward.

Sending you my very best wishes

Melissa x

Edited by member 04 Jun 2025 at 18:46 | Reason: Not specified

Mrs MAS

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