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Why can’t they treat my Lymph node PCa

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User

Posted 10 Jun 2025 at 16:04

Hiya Phil

Feeling for ya pal,seems like your banging your head up against a wall.

Fingers crossed 🤞 they sort something out that suits your needs and yes please keep us all updated .

Regards Phil

User

Posted 10 Jun 2025 at 17:57

Update: urology specialist nurses want to see me in person this Thursday. I will post the outcome.

Phil

User

Posted 13 Jun 2025 at 15:07

Went into hospital yesterday to see the specialist nurses but she’d spoken to me on the phone and arranged for my consultant to be there too. Really appreciate her thoughtfulness.

So he’s upped my steroids back up to 2mg from 0.5mg and I’ll just have to deal with weight gain and moon face.. as long as I feel better.

He also increased my calcium tablets but have to stop them around the Radium.

I’ve got some new anti nausea tablets too. So hope all that helps and will start eating soon. He says blood tests show everything is going to plan. Organs all ok and PSA bouncing around just above 40.

6 weeks till next f2f consultation. He said phone the CNS nurses if there’s any problems.

Cheers

Phil

User

Posted 14 Jun 2025 at 08:25

Hi Phil

Sounds like a plan and thats what you need,im on steroids so no where your coming from with the moon face,had my latest PSA result this week which was 169 still high but down from the previous test,getting a lot of bone ache which can vary from day to day,had scans and x-rays this week so will find out next week at my consultation and 6th infusion whether its the cancer progression or the treatment causing the discomfort let's hope its the later.

Sorry for treading on your thread Phil but I thought I'd kill 2 birds with 1 stone 😀

All the best Phil 👍

User

Posted 14 Jun 2025 at 08:48

Hope it works for you both, steroids are amazing when they work.

User

Posted 14 Jun 2025 at 10:59

Hi Phil.

Glad your PSA still coming down. Shows the Cabazitaxel is working. I did get a week or so of bone pain after starting the Radium so started taking co codamol at bed time and seemed to work. I take them every night now. You may recall I changed Hormone therapy at the same time I started the radium so don’t know if that made any difference. I changed from Degarelix to Orgovyx. Definitely better having pills than the monthly injection which could be very painful and caused bloated stomach.

My consultant said the other day he’s pleased the Radium seems to be working as there’s only Cabazitaxel left in the box now. 😳

Feeling a bit tearful today but I’ll get over it. Friends coming round tonight and we’re getting a takeaway… I’m hoping I can at least stay in the same room or even have a few mouthfuls… Had a bad day yesterday with taste / gagging and so didn’t eat much .

You can tread on my thread whenever you like Phil.

Cheers guys

Phil

User

Posted 16 Jun 2025 at 15:34

Hi guys.

Well another call out to 999 last night. Constipation again . I’m afraid I’m not taking my Laxedo often enough. I was in agony but luckily this time I managed to shift it myself… Or I should say it shifted itself.. 😳 ! But the pain before made me throw up all over my bed…
Doctor phoned and said they’d send a paramedic/ambulance to check me over which they did and said I was ok to stay at home if I wished. Which I did. So must drink more and take regular Laxedo.

Phil

User

Posted 16 Jun 2025 at 21:22

My husband has suffered really badly with constipation but regular Laxido helps a lot. Can be very painful until it shifts

User

Posted 27 Jun 2025 at 21:35

I'm a bit worried about Phil. He hasn't posted for a week. I've tried to personal message him and haven't had a reply. Has anyone else been in contact with him. I just hope he hasn't been taken to hospital again?

User

Posted 27 Jun 2025 at 21:59

Hello Adrian, guys. Apologies for going missing in action. I have had a few busy days and was feeling a bit down …! Backs giving me a bit of jip too.

Monday our friends took us to Burnham on Crouch and they wheeled me along the sea wall. We stopped for a light lunch ( my usual sausage sandwich and lemonade) Wore me out though as I did my best to walk some of it. Wednesday had my palliative nurse come and more blood tests. She is so good.

Today was Zolandronic acid day and all went ok . We even went out to a pub after and my usual sausage sandwich and lemonade…. Getting boring now …! I’m frightened to try anything else but I need to get over it.

Still having my naps but I’m sure I’m feeling a little more energetic 🤣. My son came over yesterday and took me for a walk up the hill and back. Walking not in the chair. Was pleased with myself.

But as I said had a bit of a downer this week so I gotta snap out of it.

I’ll try to update a bit tomorrow and Adrian I might pm you to try to explain where my heads been going. A lot of historical crap I’m afraid.

Thank you for being so thoughtful. Really means a lot.

Take care,

Phil

User

Posted 27 Jun 2025 at 22:16

Great you're, OK mate. You'd not been to our pub for a while and I just had a horrible feeling that you been taken to hospital again. I'm not stalking you, honest.🙂

"I’ll try to update a bit tomorrow and Adrian I might pm you to try to explain where my heads been going. A lot of historical crap I’m afraid."

By all means Phil, I was trained in such issues. You are always welcome, at anytime to give me a call. I'm home all over the weekend.

Edited by member 28 Jun 2025 at 09:49 | Reason: Additional text

User

Posted 28 Jun 2025 at 07:34

Good to hear from you Phil. Can't beat a sausage sandwich eh.

keep fighting.

Kev.

User

Posted 29 Jun 2025 at 09:23

Great to here off you Phil

Yes we all have our off days but gotta try and make the most of our good days

You take care Phil and keep fighting the fight 💪

Phil

User

Posted 29 Jun 2025 at 11:14

Hi guys. Great to hear from y’all.

Yeah, bound to have these off days I suppose. I should know I’ve had enough. Funnily enough mostly at the beginning when I became a wreck and my counsellor eased me through it all.

Sat in the summerhouse right now. The missus has cut the grass and it looks lovely.

Watched the U21’s footie last night . What a great performance from them.

Got some cardboard boxes to cut up now ready for the bin men.

So hope you’re all enjoying this weather? I’m trying to make sure I drink enough water as I don’t want that constipation again.. no thank you…

Cheers guys

Phil

User

Posted 03 Jul 2025 at 11:24

Hi guys. Just to update my little thread with the latest.
Was due my radium Tuesday but hadn’t received a letter or a call. After leaving many messages and then hanging on at Nuclear medicine they answered at 10am and told me the radium was postponed for a week and they’d phone with a time. Was a bit annoyed no one had called me.
Well we were at the hospital Tuesday for the wife’s physiotherapy and nuclear medicine called so I said give us 30 mins and we go up there.

So we get there and they told us Oncology hadn’t ordered the radium in time. No idea why. So we have to go to oncology next Tuesday before the radium for a check over and we’re gonna try to find out what happened. Certainly don’t want it happening again and we old have liked better communication…!

Anyway, hopefully all will go to plan from now on.

I’ve started to get some pain in the front of my chest now in addition to lower back. So I’m gonna ask in oncology next week if it’s ribs or vertebrae pain.

So take care chaps.

Cheers

Phil

User

Posted 03 Jul 2025 at 11:37

Hi Phil

I know the NHS are under severe pressure but there's no excuse for such poor communications. I hope they get their act together and they're are no further problems.

Sorry to hear about the new pains mate, let's hope they do something to make you feel a bit more comfortable.

Are you still struggling with food?

User

Posted 03 Jul 2025 at 11:45

Cheers mate.
Regarding the new pains I did a little push test last night and it was actually a lot more painful than i expected and made me jump… but ill ask next week.

Regarding eating my missus actually did sausage and mash at lunchtime yesterday and I almost finished it . I was well pleased. Hopefully things are getting better 👍🤪

Phil.

User

Posted 04 Jul 2025 at 07:18

Hi Phil

Very poor comms from the NHS but unfortunately it doesn't surprise me,good to here off you and good that your getting sone proper food down ya lol.

I had rib pain last year,although the cancer was in the spine it travelled round to the front which can happen I was told,i was tattooed up a 1 small dose of radiotherapy helped,maybe thst may be option for you.

All the best Phil.

User

Posted 10 Jul 2025 at 11:07

Hi guys , just a quickie.
Had my radium Tuesday all good as planned. Although I need to be re weighed for the radium dose as I’ve lost weight I’m getting close to the dosage tolerance . I.e getting too much. Nurse spoke to my Consultant and he has increased my steroids a little to 4mg and 2mg alternate days. See how it’s doing on 24th when I see him next.
He’s also looking at my hormone therapy Relugolix to if there’s something else to try. Although it’s a new pill I believe for the U.K. so difficult to know about side effects.

I’ll get my blood test results and PSA when I see him. Be nice if the PSA has dropped a little.

Still having my naps and early nights.

So hope you’re all keeping well? I’ll pop back in the Pub shortly.

Take care

Phil

User

Posted 10 Jul 2025 at 17:54

Thanks for the update, Phil - hope the Radium's OK.

Would be interesting to know about the new hormone therapy, but in the meantime fingers crossed for a decent PSA drop, and keep on keeping on!

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