Why can’t they treat my Lymph node PCa

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

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

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

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

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

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