Why can’t they treat my Lymph node PCa

Hi Phil,

Just catching up on threads after being away for a while. I’m really Sorry to hear that things haven’t been good for you recently. I can’t offer you any advice I’m afraid but I just want to wish you the best of luck and hope you manage to get the pain under control.

Derek

Hi Phil.

I'm sorry that you're feeling blue today. I hope the badminton lifts your spirits. 

I'm glad that you are managing to get some decent kip. Since my diagnosis, I seem to sleep like a baby. Crying and peeing myself all night. 😁

hahaha

Hi Taz.

Hope you can get on a treatment plan that works for your husband. it’s a rollercoaster of a journey but this forum is magic. There are some very knowledgeable people on here to help and advise. 

I had my Degarelix injection Monday and boy is it painful. I’ve had to skip badminton today as if I catch my injection site it’s agony. My poor nurse really tries her best to get the injection in the best place but it’s the drug mixture which is the problem. I also seem to get extra tired for a few days after.  

Took our goddaughter to the pictures last night which was lovely and had a hotdog in 5 guys after…. Wouldn’t have been our first choice for food but was her choice and she enjoyed it. I did have a sneaky Bud too…! 

Less than a week now to seeing my consultant so a bit nervous. Hoping for either no rise or minimal so he might leave any more treatment for another couple of months. Which means our travel insurance is ok and we can go on our Portugal holiday middle of April…. 

Im now taking paracetamol 4 times a day for the back pain as prescribed by my palliative nurse. Seems to be working but I’m suspecting my consultant will book some scans anyway to see what’s going on. It could just be old age etc or the start of the spine mets playing up. 

Looking forward to warmer weather now so I can get outside or in the garage to tinker or just sit in the garden with a beer or a wine.

Hope everyone is ok ? 

Must pop my head in the Virtual Pub and see who’s in 🤣

cheers

Phil

Phil, that injection does not sound nice ,I am due to start zoladex soon. I have originally opted for monthly ,might have to go for three monthly. 

Best wishes and thanks for your support.

Thanks Chris

Morning all, 

Well a weeks gone by since my last Degarelix injection and my tummy has finally softened somewhat. Injection site still has a big lump and a bit tender but better than it was. 

Seeing consultant tomorrow so gonna ask if he thinks the Degarelix is doing anything at all. I suspect I am Hormone resistant now so theoretically it’s not helping. Likewise the Dexamethazone steroid. When I came off it in September I was still having chemo so difficult to say if it’s doing anything or not other than giving me a fat face and belly 🤷🏼

All questions to ask tomorrow. I’m very nervous as not really had any treatment to hold back the cancer since the chemo was stopped. So no idea what to expect, but obviously hoping for a miracle 🤣… I suspect they’ll want more scans again. 

So anyway still hoping whatever they bring on that I can still keep my travel insurance and have our trip to Portugal in April plus anything else we can think up 🙂. Gotta have something to look forward to . 

Will keep you up to date 👍

Take care

Phil

Good luck Phil, I hope your holiday plans are unaffected. 

Cheers, 

Kev.

Good luck for tomorrow Phil. I'll be thinking about you mate. 

Hi Phil 

Not the greatest of news but it seems like you have a plan in place for the coming months and that's the main thing moving forward.

Trial windows are closing and opening all the time,I'll find out which arm of the trial I'm on in the next few days and I'll update on my thread.

Wishing you all the best....Phil 

Not the news you wanted Phil, good to see you’ve got your holiday booked. You boys are amazing. I hope the radium treatments isn’t too hard going. 
Leila. 

Edited by member 20 Feb 2025 at 21:33  | Reason: Not specified

Hi Phil

Gotta get in to your head that your having treatment and that everybody reacts differently to different treatments,what doesn't work for some may work for others and visa versa and treatmente keeps it under raps longer for some people than others.

Keep the faith...all the best Phil 

I'm going up the Villa v Chelsea game today with my son,one last blast before treatment starts Wednesday.

Edited by member 22 Feb 2025 at 08:54  | Reason: Not specified

Hi guys, just a very mini update … 

Had my Degarelix injection this morning so just waiting for the pain and bloating to start …! I managed to walk home uphill afterwards which is a result. Only stopped 3 times … It’s about 1/3 mile 🤦🏼

Still feeling really tired and sleepy. I know the reduction in steroids takes a while to work so I’ve just gotta wait and see what happens. Big belly still getting me down . I tried to get a pair of trousers on yesterday but was no chance so ended up in joggers again. I look like a right slob. 

Blood test tomorrow ready for my consultant appointment next Tuesday. 

Going to ask about Cushing’s syndrome which is related to Dexamethazone use . It’s where the body creates too much cortisol and I have just about all the symptoms. I even had the nurse this morning ask about the bruises on my forearms. 

So I’ll update again after next weeks appointment. 

Cheers

take care

Phil

Well hello guys. 
I have ended up in hospital these last few days. Hoping to be released today but not sure yet. 

Had my Degarelix on Monday morning. 

 Monday evening I just felt so rubbish and tired and breathless I went to bed at 8. Wifey came up to check on me and ended up calling 111. They sent an ambulance and they ended up taking me into hospital. 
A&E said I had low oxygen saturation and probably fluid on my lungs and stomach.  So they booked an X-ray , echocardiogram and CT scan. 
Doctor yesterday said no fluid on lungs but some on my stomach . I’d had my Degarelix Monday and he didn’t like the swelling and redness so I’m on antibiotics for that. Not sure that will help as it seems normal with Degarelix. I will ask about injecting in my thigh or back of my arms as I’ve seen on Dr Google … 

Presuming my heart is ok as he didn’t mention it.

Also put my Dexamethazone back up to 2mg for 2 weeks to help with breathing. 

Just want to know they are sure what’s wrong before they kick me out. No one’s mentioned the possibility of my extra weight in my tummy pushing up into my diaphragm. Another question to ask. 

See my oncology consultant next Tuesday so hopefully I’ll get some more answers. Just gotta sort out a blood test before as I missed my appointment this week. 

At least they don’t think it spread of cancer to my lungs… which I was worried about. 

Anyway I’ll keep you lot posted 👍. 

My tea lady had just appeared … 

Take care friends, 

Phil

Hi Phil

If you'd gone private, you'd have got your own Goblin teasmade.

Joking apart, mate. You and your good lady are going through a very torrid time. My heart goes out to you both. Hopefully they'll let you out and you'll soon be back home. 👍

Pleased to hear you’re back home Phil and sounding so positive.  We feel for you and your family and can only imagine how difficult it’s been for you.  Keep pushing through, you’re amazing !!

Ange x

Bless you Phil, you’re having a rough time of it. So sorry you’ve had to cancel your holiday as I’m sure you could really do with a break away from it all, but likely not worth the stress and anxiety just now. Fingers crossed things improve for you and you can get away later in the year. 🤞🏻🤞🏻🤞🏻. Thinking of you and your “missus”.  

Hi Phil, 

That's a real blow after you've been through, you and your wife really deserve a break. 

Fingers crossed that you fully recover from the infection and that your PSA continues to fall. 

Best of luck. 

Kev.

Goalhanger, sorry to hear about your situation, I hope they come up with some action to improve things. Take care.

Thanks Chris 

Thinking of you and your family. I don’t think some people realise how complex and difficult this disease is, you look ok, you sound ok, what’s the problem, maybe the fear of cancer is too great for some people to process. 

I sometimes wonder if some folk think it’s catching, or they are more at risk if they talk about it. 

Take care, and enjoy the sunshine. 

Leila 

Hello guys and gals. I’ve stopped the flucloxacillin a good day now but I still feel rubbish. Really tired and no appetite. If fact nothing tastes nice. A bit like the chemo mouth. 
it’s getting me down to be honest and I can’t wait to see the nurse Wednesday. 
Any ideas ? 

cheers

Phil

Hi Mike, guys. 

My lack of appetite is also obviously affecting my eating . Last night I had 1 small piece of chicken, half a small baked potato and some sweetcorn. I didn’t have any lunch either but I had a nearly 4 hour nap in the afternoon . 

My nurse is doing a blood test Wednesday so we’ll see what shows up. 

Can’t see anything cancer related doing this. Latest CT scan showed up nothing in the torso area. My PCa is in my spine/ribs/pelvis and lymph nodes from stomach to upper chest area, LHS. 

So at a bit of a loss to explain it all. The CRP infection marker in my blood will show if my infection has gone away. Not sure how long the fluclixacillin takes to disappear. I was on a very high dosage. 

So hoping today is a bit better 👍

Cheers

Phil

Edited by member 24 Mar 2025 at 11:38  | Reason: Not specified