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Why can’t they treat my Lymph node PCa

User
Posted 25 Mar 2025 at 06:04

Hi Phil,

it’s so important you get some nutrition into your body but can only imagine how difficult it is when you just don’t feel like eating. I’m wondering whether some kind of nutritional shake might help? My mum was prescribed that when she had no appetite and not eating, and you will know that I use a shake full of protein  for my weight loss.

i also know that anytime I have lost my appetite I find I can still manage a shake.

might be worth a try?

Take care,

Derek

User
Posted 25 Mar 2025 at 10:14

Hi guys. 


With regard to an aperitif, I’ve kinda gone off alcohol too. Although I had some wine the other day and it tasted fine. 


I have a real issue with shakes. I’ve no idea why. Not sure if it’s the texture… But when I had the chemo mouth last year I did have a few and they are definitely better than they were a few years ago. So I think I should try them out. 

I’m losing a tiny amount of weight , probably less than a half a pound a week. But then I’m not doing much to use the energy. 

I managed to nearly finish a steak and kidney pie last night but no chips or peas. And just had some cereal for breakfast. 

See what my blood test shows up … should find out Thursday. 

 

Cheers chaps

Phil

 

 

 

Edited by member 25 Mar 2025 at 10:14  | Reason: Not specified

User
Posted 01 Apr 2025 at 01:13

Originally Posted by: Online Community Member
I have a real issue with shakes. I’ve no idea why.

So do I Phil. I put mine down to too much booze. 😁

User
Posted 24 Apr 2025 at 14:45

Hi chaps. Another update from my latest consultation. 
A lot to take in… 

PSA up to 40 from 30 . Not so bad considering I’m only on the Degarelix and Dexamethazone as treatment. 

Bone scan from 20th March shows quite a lot more involvement now. There is now spread in ribs, spine, neck, skull, shoulder blades, collar bone, hip, thigh and left knee…….! So probably rules me out of training for a marathon 🤣

So they are starting me on the Radium 223 in a few weeks. plus bone building pills and infusion. 6 sessions 4 weeks apart. 

Also going to try out some new Degarelix pills instead of the injection. They’ve only had them 2 weeks so bit of a trial. But hoping it’s better than the bloated belly and pain with the injection.

Staying on the 1mg Dexamethazone for the time being. 

I suppose this is the next step forwards. Bit gutted by the amount of bone spread especially to my skull as I seem to recall mention of spread to brain from there … 

Anyway, don’t have a lot of choice now. They seemed pretty convinced this was the best next step. 

Think we deserve a glass of wine tonight. 🍷 🙂. 

Cheers everybody, hope all is well with you all ? 

Phil

 

User
Posted 24 Apr 2025 at 14:52
So sorry to hear of the spread Phil.

I think you are Southend, as are we. It’s reassuring they are looking after you so well, and a positive that they have the radium 223 and other things to support your skeletal issues. I haven’t looked this far ahead but will read up on this.

Enjoy your well deserved wine, very best wishes to you and yours.

User
Posted 24 Apr 2025 at 15:17

So sorry to hear of the further spread, hopefully the radium will help. 

best wishes Ann

User
Posted 24 Apr 2025 at 15:54

Hi Phil,

I wish I lived nearer and we could go out for a pint. 

User
Posted 24 Apr 2025 at 16:07

Originally Posted by: Online Community Member
So sorry to hear of the spread Phil.

I think you are Southend, as are we. It’s reassuring they are looking after you so well, and a positive that they have the radium 223 and other things to support your skeletal issues. I haven’t looked this far ahead but will read up on this.

Enjoy your well deserved wine, very best wishes to you and yours.

 

 

Hi Turkey2222… yes Southend hospital is my local and they’ve been good. Only thing was I was seen in July ‘17 with high PSA and they said all was ok but another PSA test in November and then the proverbial hit the fan and was diagnosed in January’18. So wonder what could’ve been done in the few months before I was finally diagnosed. 
Who knows… 

Hope all goes well for you 👍

Edited by member 24 Apr 2025 at 16:08  | Reason: Not specified

User
Posted 24 Apr 2025 at 16:12

Originally Posted by: Online Community Member

Hi Phil,

I wish I lived nearer and we could go out for a pint. 

 

That would be good 🍺 👍… 

KevT and I met up in Jersey as we were both there at the same time. Was really nice and I don’t think we mentioned PCa once… 

Cheers

Phil

User
Posted 24 Apr 2025 at 17:31
Phil I’m gutted to hear of all this considering where we both were a couple of years ago. I’m mega proud of you and your stoicism but I also know well the fear inside. You’re an utter trooper and a real example to all of us friend. Have a glass for me , and if you want a steak and cheese and biscuits then just do it. In my prayers tonight Phil for what it’s worth ok. Take care 🤗
User
Posted 24 Apr 2025 at 21:31

Sorry to hear this mate.

Keep fighting!

I know we are all different, but if it's any consolation, I started with a very similar skeletal scenario to where you have arrived now (although mine was face rather than skull), and 3 years later am still here.

Good luck mate.

User
Posted 24 Apr 2025 at 23:02

Really sorry to hear this Phil. You have been truly amazing and I sincerely hope the Radium 223 works its magic and slows things down.  Enjoy your glass of wine and keep looking forward to spending time at Center Parcs with your family.

Always thinking of you xx

User
Posted 25 Apr 2025 at 12:10

Hi Paul. Wow you’ve done amazing after your prognosis. The Enza really worked for you. I tried Abiraterone but it didn’t do anything. 


The hospital just phoned me and starting the R223 on 6th May. they’ll order the stuff in then call me to arrange a time. 

They’ve also changed me from the Degarelix injection to Orgovyx pills. Hoping it does something and is kinder to my belly… 

Also started a course of calcium pills to strengthen my bones a bit. 

Off out to lunch now with a pal. 

Take care 

Phil

User
Posted 25 Apr 2025 at 20:35

Really sorry to hear all this Phil, I wish you all the best with whatever they throw at this next.

Your strength is an example to us all and it’s so good to hear you’re still getting out and about and I hope you enjoyed lunch.

take care,

Derek

User
Posted 26 Apr 2025 at 13:48

Hi Phil

Sorry to hear the news,fingers crossed that this treatment is tailored for you and it knocks it in to touch for sometime,as you know some treatment works for some and not for others,this my be the one for you.

Can't believe they've only just started you on calcium tablets I was put on them a few years ago,how some NHS areas work differently to others.

Hearing your news has made me more determined to keep up my visits to London and make the effort and im grateful to you for that.

Wishing you all the best with your journey and please keep us updated.....Phil 

User
Posted 26 Apr 2025 at 14:29

Hi Derek. Don’t know about strength but you just have to keep going don’t you. The tiredness has been a bane recently but we’ve contacted the palliative care nurses to check my bloods for another infection. 

Had a nice lunch out yesterday with a mate. Looking out over Sarfend seafront. Gonna take the missus there on a date night 🥰 🤣… 

Cheers, take care 

Phil

User
Posted 26 Apr 2025 at 14:35

Hi Phil.

yep fingers crossed it does some good. 

Registrar says my calcium measurements have always been pretty good and you can overdo it apparently. So I’ve got some pills just for a week then the Zolendronic acid infusion in line with the Radium. 

Feel good to have given you a boost as well. Can’t be easy with that journey every 4 weeks. You’re an inspiration to us all too 👍. 

cheers

Phil

User
Posted 26 Apr 2025 at 19:30
Just read your posts, I’m so sorry it’s such a turbulent journey for you. Good you have such wonderful supportive family around you, that’s good for you and your lovely wife.

You are such a trooper young man I hope you look in the mirror and tell yourself how special you are.

We have been enjoying our garden and yesterday David bought me a wonderful arch for the garden and I’m planning to grow evergreen clematis over it.

It was my 70th birthday last weekend thankfully I was born the day before Hitler, and for that I’m very grateful, a day later and it would have been me and Adolph on the same day.

Let’s hope the summer gives us all some warm sunny days, and some special family days.

You G9 lads are very special boys.

As I write David’s watching footie and Charlton are sadly loosing 3.0 other than that he’s doing well.

Leila

User
Posted 27 Apr 2025 at 15:08

Hi Leila. I’ve just had a 3 hour nap and feeling a bit more refreshed. I’m sure I’m so tired partly because of the collapsed lungs. But my consultant just said I’ve been referred to heart/lung unit and they’ve definitely received it… so just gotta wait … 

Weather is so nice today - perfect for putting up an arch. Be lovely with clematis on. 

So I’m a week or so older than you ! From what you write you are much wiser than me 🤣🤣. 

Shame about Charlton …. I have similar experiences with following Tottenham. I’d love to get back up there to see them but need to be a bit fitter and healthier for that. Last time was last August… for a friendly against Bayern Munich. 

We are planning a trip up to Ronnie Scot’s this year sometime although we’ll likely do the late afternoon gig as I might fade away with a late night now. 

Take care 

Phil

 

User
Posted 29 Apr 2025 at 15:34

Hi Andy62. I just remembered you mentioned Relugolix as an alternative to Degarelix . I asked at the time but they didn’t want to change but they’ve now changed me onto it although they called it Orgovyx. Be so much nicer on daily pills. Even not having the bother of going to my doctors once a month for the injection will be nice. 

Cheers

Phil

 

User
Posted 29 Apr 2025 at 17:01

Hi Phil,
Don’t think I’m wiser, just stubborn, inquisitive, wise never! The arch looks brilliant and I’ve been out in the garden all afternoon pottering about. 
David played at Ronnnie Scott’s a few times in his young er days. His main audience these days is me and the cats, though we are all very appreciative. He was lucky enough to play all over Europe and the USA as a young lad.Now happy with me the cats and the cattle in the local fields.

We do have a bit of a do in the garden during summer if the weather permits, as David’s birthday in July he’s a young 75 this year. 
 As he’s on such a complex regime of meds we can’t really fly any more, we were just reminiscing earlier about our travels in Thailand and Laos, and a hilarious border crossing into Myanmar where the guards looked like old boys from dad’s army. 
It was blistering hot and the passport workers had on leather jackets sunglasses and tried to look hard, behind them was a window with flowery curtains when diluted the whole picture into hilarity, though we dare not giggle until we were well away. 
David gets tired he doesn’t rest in the day, but he doesn’t rise early, he also goes to bed late, the life of a jobbing  musician I suppose. 
He paces himself and does a few hours in the garden each day, in winter we have a gym to keep us going. 

Football, ahhh, I am used to it, I support and make all the right noises as required, but I’m not interested at all really. 

I did get to hold the FA cur many years  ago, can’t even remember  the occasion. 

Lovey to read your post, enjoy the sunshine.

Leila 

 

User
Posted 05 May 2025 at 10:53

Well here we are one day from starting my Radium 223 treatment. Had my Zolandronic Acid Friday afternoon which was easy. But have had a couple of days feeling even more tired than normal.

Also saw my palliative care nurse Friday afternoon for my blood test. Also I mentioned my taste is still not right. She recommended eating pineapple which I’m now trying out. I’m worrying now that the chemo has permanently damaged my saliva glands. Anyway we’ll see. 

Start on the Orgovyx tomorrow in place of the Degarelix. Got to be easier than monthly injection and it might even help a little bit with the cancer …! 

Been a bit emotional last couple of days too. I’m just not ready to check out yet.. Still got stuff to do . 

Kitchen fitters here tomorrow to start ripping out the old one . 2 weeks of no kitchen. Be nice when it’s done though. 

Oldest boy and family flying back to Jersey today. Been here with us after our week at Center Parcs. Been lovely but a bit tiring. Going to be emotional seeing them off as we can’t pop over there like we used to. Still waiting on my respiratory appointment to see about my collapsed lungs. May have to look at the drive to Portsmouth/Poole for the ferry crossing. 

So hope you’re all keeping good out there. 

take care 

Phil

 

User
Posted 05 May 2025 at 11:56

Hi Phil.

I can't even imagine what you're going through, mate. My heart goes out to you and your family. I wish there was something I could do to help. 😟

Edited by member 05 May 2025 at 11:57  | Reason: Typo

User
Posted 06 May 2025 at 04:45

How are you finding the switch from Degarelix to Orgovyx? I’ve been wondering whether to bring it up at my next appointment.

User
Posted 06 May 2025 at 09:25

Hi Phil 

Good to here off you,no where your coming from with the emotional issues and with close family going home,my lad was back for the weekend and it takes your mind off things and gives you a lift when there here,im off to London tomorrow for my round of cabizitaxel so that will be 14 rounds of chemo now!im getting no younger and don't know how much of this crap going into your body we can take but you gotta keep going.

Wishing you and the Mrs well and keep ya pecker up pal.....Phil 

User
Posted 06 May 2025 at 09:51

Hi Dean.  I actually take my first Orgovyx today so no idea yet how I’ll be or if it’ll make any difference whatsoever. Certainly be easier than booking a monthly jab at the doctors. Worth a try though. 

Hi Phil. It’s certainly a tough journey isn’t it! But I think we all seem to find a bit of hidden steel when this happens and just get on with life however we can. My heart goes out to you having to endure the Cabazitaxel sessions especially with the travelling as well. I do hope it will make a difference and best wishes to you and your missus. It’s a journey you both go on isn’t it. 
Be thinking of you tomorrow mate. 

Phil

User
Posted 06 May 2025 at 10:12

Thinking of you today, take care.

Leila 

User
Posted 08 May 2025 at 12:49

Well here we are 2 days now since the first Radium infusion. Just feel a bit tired but not sure of the actual reasons for that. 
Spoke to my GP yesterday about my taste and appetite and did a swab today for them to test. 

Im not eating much as Im not really doing anything to burn it up.

Hoping they’ll find I’ve still got the thrush and I can get antibiotics for it. It’s getting me down a bit. Forever tired and not fancying any food. 

Got to organise 3 blood tests every month now. 1 for the Zolandronic acid, 1 for the consultant appointment and 1 for the Radium… Hoping my palliative nurse can help out or it’s a trip to the hospital for each one. 

Anyway , gonna try to perk myself up a bit as it’s no good moping around. We don’t have a kitchen at the moment as we’re having it refitted. Nightmare… but lovely when it’s done. 

So onwards and upwards. Spurs on TV tonight so hopefully that’ll bring a smile to my face…. 

Cheers everyone 

Phil

User
Posted 10 May 2025 at 20:32

Well I suppose Spurs gave me a bit of a boost 🤣. Cant see us beating Man Utd though the trophy though.

Still feeling tired and had another 2 hour nap today and I did spend a bit of time in the garden in the sun, only sitting mind you. 

Taste still not back to normal and not heard from GP about my swab. 

So feeling a bit sorry for myself at the moment. Just like a day where I feel almost normal. I know that’s gonna get rarer now isn’t it..! 

Hope you guys are enjoying the weekend sun? 

Phil

User
Posted 11 May 2025 at 08:54
Oh wasn’t it a boost?!

I see a trophy at last and I’m usually not optimistic about anything 😄

Hoping your taste returns things settle and you have many more days of feeling normal. 🤞🏻

User
Posted 13 May 2025 at 09:32

Hi guys. 

Well got the results of my swab back and it’s ok. So presumably the taste thing is a side effect of the Radium. It is getting better, just very slowly. See my consultant next week. I also changed from Degarelix injections to Orgovyx tablets last Tuesday so maybe some slight changes from that. Must say I don’t miss the Degarelix injection at all… 

Went to the opticians yesterday as my eyesight had deteriorated rapidly and I’d stopped driving. Turns out I have cataracts caused by the Dexamethazone steroids. He can see it has happened very quickly. He’s referred me and says it should only be a couple of months. Private would be a couple of weeks but £3500 for each eye so I’ll wait for good old NHS. 

Cheers

Phil

 

 

User
Posted 13 May 2025 at 18:06
Sorry to hear this Phil. Just sending my best and strength as ever.
User
Posted 13 May 2025 at 21:28

Hi Phil,

If it’s any consolation I’ve had cataracts removed from both eyes, and my sight now is amazing. It’s a brilliant bit of surgery.
I paid for one and had one done on the NHS, the consultant told that it’s a highly successful operation, and in his experience any infections or problems are in his opinion caused by not following the aftercare. I followed the aftercare to the letter and no problems. 
Hope the kitchen is progressing. 
Take care.

Leila 

User
Posted 21 May 2025 at 16:53

Hi guys. Had my consultant meeting yesterday afternoon. All went as expected really . PSA initially went up to 48 but came down to 45 which is good . Having so many blood tests now , almost weekly. He’s put me on calcium tablets as my levels were low. He said zolandronic acid can do that. Also seems low calcium can give you fatigue as can the Zolandronic acid. 

 

He’s also looking to wean me off the Dexamethazone steroids. I was on 2mg and I’ve come down to 1mg but he’s taking me down to 0.5mg and then finish. Hope that works out 😬 . Blood levels seem ok and he’s going to book the next Radium treatment. Still no pain from the bones. Just take co codamol at night in case. 

 

So onwards and upwards. Still needing a daily nap and not eating properly. Went round my sons and wife’s last night for tea but couldn’t eat more than a couple of bites and started gagging. I felt awful but they were fine about it. They are off to Japan for 2 weeks on Friday. I’m so jealous.


Had communication with hospital regarding my cataracts and I had to choose a hospital. Strangely enough I chose the private one nearby. Not too bad waiting time either. Thanks for the thumbs up for cataract surgery Leila. My MiL had it done but didn’t go so well for her. But she has other stuff going on with her eyes anyway. I can also see my referral for heart/lung unit on my GP App but they’ve not been in touch yet. Like to get that sorted.

Anyway, football tonight. Groans from the wife 🤣. Fingers crossed for a decent game and result. Wondering when/if we’ll get the chance to go up the Lane again to see them. Or maybe even a visit to our non-league team would be nice. Have to wait till I can face the beer and burger again… 

Take care everyone,

Phil

User
Posted 21 May 2025 at 18:23

which non league side ? I am a Notts Fan and had a few seasons Non League some grounds fine ,others not so .

Bromley was a good one to visit and Barnet but both have joined us back in the league now .

Best wishes

                   Mike { rooting for Spurs this evening }

User
Posted 21 May 2025 at 18:28

Hi Phil 

Good to here off you,always look for your posts,seems like your coping...it could be better news but it could be a lot worse.

Keep fighting 💪 

Regards Phil 

User
Posted 21 May 2025 at 19:25

Hi Phil. Thanks 👍. 
Yeah, consultant said he was pleased. Just gotta get the eating and tiredness under control… 

Hope you’re doing ok too ? 

Hi Mike,  My local non league team is Canvey. I’ve been watching them since I was 9 or 10 when I lived very close. Climbed over the fence to play football in a real goal… 

Im only a few miles away now so it’s easy. Language can be fruity at times…. 
Southend is also close but not been there for a volume of years. Used to watch them Friday evenings back in 68/9 when I was 13. Good crowds then. 

 

Phil

 

User
Posted 22 May 2025 at 08:44

Hi Phil

Not to bad,i like you am coping,having 5th round of cabizitaxel next week will update my thread next week with news then.

Take care pal

User
Posted 22 May 2025 at 08:52
Southend are still getting decent crowds for the league they are in , enjoyed an away trip there .

Keep as well as you can , and a little of what you fancy may be the key to eating .

Best wishes.

Mike

User
Posted 22 May 2025 at 08:53
Southend are still getting decent crowds for the league they are in , enjoyed an away trip there .

Keep as well as you can , and a little of what you fancy may be the key to eating .

Best wishes.

Mike

User
Posted 22 May 2025 at 12:25

Keep it up Phil. Wishing you all the best for  next week 👍. It’s not the smoothest journey is it… but I’m crossing everything that the cabazitaxel does the business for you.  

Mike, Southend won through to the play off final at Wembley last night 🥳. So double celebration. Unfortunately I’m not well enough for that trip.

I’ve seen Southend twice at Cardiff for play off finals and followed Canvey to Villa Park for the FA Trophy final, which they lost… 

Cheers

Phil

 
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