Why can’t they treat my Lymph node PCa

User

Posted 17 Dec 2024 at 09:35

Yes, got lots of questions this time and no idea why Cabazitaxel hasn’t been mentioned yet. I’ll update later or tomorrow.

Cheers

Phil

User

Posted 17 Dec 2024 at 19:27

So quick update…

Bone mets have shrunk a little but there are now 2 more lesions. Lymph nodes pretty static though. PSA was not measured at the last blood test. Added to my next one though.

He mentioned quality of life quite a few times so I guess I’m at that point where it’s about being comfortable irrespective of the cancer progression. Bit of a punch to the gut but realistic I suppose.

They aren’t starting anything new now for 2 months. He said not much will happen in 2 months. And the fact I have no pain from the bone mets means they’d rather wait with the Radium until I get pain.

Good thing is I can now fly again… 👍

Cheers

Phil

User

Posted 18 Dec 2024 at 09:47

Hi Phil

Keep positive mate,did you ask about clinical trials, cabazitaxel or letethium 177?I find it strange they don't ask you to have a blood test before every oncology appointment I went yesterday for a blood test and my next appointment isn't until end of Jan,I have one every month.

Best wishes Phil

User

Posted 18 Dec 2024 at 10:24

Hi Phil. No didn’t ask about trials as he said they think I can manage at least another couple of months without any treatment. Was a bit surreal having them talk about Q of L when up to now it’s been about kicking the cancer back.

Had a little cry last night in bed with the wife . We don’t really talk about what’s coming or end of life stuff. I’m not sure she can deal with it. But it upsets me she’ll still be young when I pop off as she’s 8 years younger than me.

I do always have a blood test but sometimes they don’t put PSA on it, like last time.

Take care

Phil

User

Posted 14 Jan 2025 at 10:46

Had a really bad night last night . I couldn’t get to sleep with all sorts washing through my poor brain. But also had bad pains in my legs , especially the right one which had pain running from hip to ankle. I had an ibuprufen before bed then another in the night. And I managed to get some sleep from about 5am to 9. Hoping this is a one off although my right leg feels like it might collapse when I’m walking on it now.
wonder if this is the start of the bone mets giving me gyp.

Phil

User

Posted 14 Jan 2025 at 13:09

I have nights like that but it's more my feet, sometimes I fidget like crazy it's like I'm wearing someone else's,I've been prescribed co-codomol for pain so I take one before bedtime to help me nod off,there is a tablet for the problem I think it's to do with nerve endings that are damaged while on chemo,perhaps your issue could be the after effects of your chemo.

All the best Phil

User

Posted 14 Jan 2025 at 14:41

Hi Phil.

Yes I’ve got the Neuropathy on the soles of my feet and they sometimes get really itchy at night. And these leg pains could be related to chemo nerve damage, or to the mets in my spine, specifically the T10 which has the nerves routed through it.

I took ibuprofen last night. I have co-codomol in the cupboard but im loath to take it as I’ve had some bad reactions to it before. I’m also allergic to voltarole.

cheers

Phil

User

Posted 14 Jan 2025 at 14:51

Sorry to hear this Phil. I’m 4 years on Deca now and my legs and mobility are really the only thing giving me trouble. They ache 24/7 and are restless. Both full legs. Can’t get them comfortable and they are very weak. But I’m still here ! Thinking of you boys as ever even though less active on the forum these days. I try to just forget it all in honesty. Best wishes mate

User

Posted 14 Jan 2025 at 18:54

I had "Leccy Legs" last night too, had to get up out of bed and go downstairs.

Maybe something to do with a full moon!

User

Posted 14 Jan 2025 at 20:33

Nice one Paul0 that made me chuckle 🤭

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 👍 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. 🤣🤣

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 👍

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

Good luck

Phil

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