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Why can’t they treat my Lymph node PCa

User
Posted 15 Jan 2025 at 07:39

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

User
Posted 15 Jan 2025 at 10:44

Hi guys.

Thanks for your replies πŸ‘ appreciate it. 

i took half a sleeping tablet last night and it worked well. I woke up around 3am for a pee but went straight back off after. 

No leg pain so that was good. Gonna pop to my Badminton later so hope I’m ok there. Couple of games and a cup of tea at half time. 

For some reason feeling a bit tearful today. I imagine it happens to many of you guys as well. I might try to get a couple more counselling sessions after my next hospital consultation. 

take care peeps, 

Phil

User
Posted 15 Jan 2025 at 10:53

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. 😁

 

User
Posted 15 Jan 2025 at 11:47

Hi Adrian. 

Yeah can’t shake it off today. Badminton will help I’m sure. 

Getting some decent kip will help as well . 

You made me laugh there about being like a baby.  πŸ€£πŸ€£

Cheers

Phil

User
Posted 16 Jan 2025 at 12:27

hahaha

User
Posted 11 Feb 2025 at 17:29

I have been reading your story as my husband has just been diagnosed and it already spread to his lymph nodes. You are truly inspirational Phil and wish you all the very best. Taz x

User
Posted 12 Feb 2025 at 14:21

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

 

User
Posted 12 Feb 2025 at 17:19

Thanks Phil. Your attitude to this whole scenario is just amazing and I so hope  my husband and I can follow your example. Waiting for results of pet scan next week and see where we go from there. Good luck with your forthcoming appointment. Take care x

User
Posted 12 Feb 2025 at 18:08

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

 

User
Posted 12 Feb 2025 at 18:50


Hi Chris.

I don’t recall having any issues with the Zoladex other than it not working… Hoping it does the trick for you πŸ‘

I had 3 monthly injections. It is annoying having to have the Degatelix every month. 

Good luck

Phil

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 πŸ™‚. Gotta have something to look forward to . 

 

Will keep you up to date πŸ‘

 

Take care

Phil

 

User
Posted 17 Feb 2025 at 11:00

Good luck tomorrow Phil. Let us know how it goes ,mate πŸ‘

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 πŸ‘. 

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

Thanks

Phil

User
Posted 17 Feb 2025 at 13:38
Great info from Andy62. Good luck Phil. Everything crossed for you ok πŸ‘Œ
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. πŸ‘

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 πŸ‘. 

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 πŸ‘

 

take care all, 

Phil

 

 
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