Why can’t they treat my Lymph node PCa

User

Posted 17 Feb 2025 at 10:33

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

User

Posted 17 Feb 2025 at 11:00

Good luck tomorrow Phil. Let us know how it goes ,mate 👍

User

Posted 17 Feb 2025 at 12:18

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

Cheers,

Kev.

User

Posted 17 Feb 2025 at 13:08

I have recently heard from an oncologist that the injection site reaction to Degaralix can be due to getting some of the injection on your skin surface, but I doubt that accounts for all cases.

There is an alternative which was approved by NICE last year, Relugolix, which is a daily tablet GnRH Antagonist (Degarelix is also a GnRH Antagonist). If you are getting severe injection site issues to Degarelix, then you could ask if you can have Relugolix instead. [Disclosure - I am a patient consultant to Accord, who sell Relugolix.]

The hormone therapy is almost certainly still working in terms of preventing growth of some cancer cells. What happens when you become castrate resistant is that new cancer mutations which are resistant to the actions of the existing drug start growing. However, the existing drug is still holding back the original cancer cells. It's only if the hormone therapy and chemo have wiped out the original cancer cells (which can happen) that the hormone therapy is no longer beneficial, but usually you stay on it.

You have to come off anti-androgen drugs like Bicalutamide, Enzalutamide, and the other *utamides if they stop working, because one way they can stop working is that the cancer learns to use them instead of Testosterone.

Edited by member 17 Feb 2025 at 13:12 | Reason: Not specified

User

Posted 17 Feb 2025 at 13:12

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

User

Posted 17 Feb 2025 at 13:15

Cheers guys.

Thanks for the info Andy . Very interesting. I’ll look up Relugolix right now 👍.

I think I was trying to make the cancer too simplified and it obviously isn’t that simple… 🤔…

Thanks

Phil

User

Posted 17 Feb 2025 at 13:38

Great info from Andy62. Good luck Phil. Everything crossed for you ok 👌

User

Posted 18 Feb 2025 at 16:55

So, latest update from my consultation this afternoon.

PSA doubled to 34.5 from 19 in November. He’s not overly concerned about that. I’d rather it hadn’t gone up but with only the Degarelix treatment it was bound to happen. I asked about Relugolix instead of Degarelix but he said he wants to stay with it. But he’s reducing the Dexamethazone from 2mg to 0.5mg over a month .

Booking an emergency CT scan and an appointment at the heart clinic because of my wheezing chest. Doesn’t think it’s cancer but wants to check. Bone scan as soon as it’s allowed. ( 4 months gap ?)

Radium 223 to be started probably as soon as we are back from holiday on 28th April. Also mentioned Alendronic acid with it.

Next appointment 4 weeks…

So could’ve been a lot worse 😬…

Oh, also he’s not heard of the Amgen trial Phil_1969 is going on but he’s gonna look it up. 👍

So, onwards and upwards….

Take care chaps

Phil

User

Posted 19 Feb 2025 at 12:18

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

User

Posted 19 Feb 2025 at 14:18

Cheers Phil.

Was expecting the PSA rise really. You just don’t like to hear it do you …

Looking forward to reducing the steroids though 👍.

Just booked my CT scan for this coming Sunday afternoon. Get that over with and hopefully my heart and lungs are ok.

Best of luck for the trial. If you ever want to pm me that’s fine. Sometimes you just need a rant…

Take care

Phil

User

Posted 19 Feb 2025 at 23:03

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

User

Posted 20 Feb 2025 at 11:10

Hi Leila.

Yes not sure about the Radium treatment. They are going to check I have no spread to organs as they can’t do the radium then.

I did ask about Cabazitaxel and he said that would be after the radium. As it is another chemo drug I’m not sure how I’d get on with it as I wasn’t well at all after 7 sessions of Docetaxel.

Im slowly getting my head around where I am on this journey. It’s hard to accept but it’s the only way forward. Taking strength from the guys who’ve already trodden this path before me.

Hopefully a few more holidays yet but unlikely to be abroad again . Still plenty left to see in good old Blighty 👍

take care all,

Phil

User

Posted 22 Feb 2025 at 08:52

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

User

Posted 22 Feb 2025 at 10:45

Cheers Phil.

Thanks for your thoughts and kind words.

Mostly at the moment my breathing is causing me the most issues… Hopefully reducing my steroids will help.

Good luck at Villa today. Hope you can grab all the points . Enjoy yourself’s.

Will be thinking of you Wednesday 👍

Phil

User

Posted 10 Mar 2025 at 16:48

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

User

Posted 10 Mar 2025 at 19:22

Degarelix is the Devils Semen in my book , glad to h.ave finished it now , mind that never got my T below 1.
Found isome injections worse than others , hope this one is less sore this time .

Mike

User

Posted 14 Mar 2025 at 10:06

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

User

Posted 14 Mar 2025 at 10:23

Hi Phil

Bloodyhell your having a rough time at mo,I hope everything settles down and you can get some kind of normallaty back in your life.

Keep us updated all the best Phil

User

Posted 14 Mar 2025 at 10:36

Originally Posted by: Online Community Member

My tea lady had just appeared …

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. 👍

User

Posted 14 Mar 2025 at 19:58

Thinking of you as ever Phil. Sorry you’re going through it mate 🤗

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