Why can’t they treat my Lymph node PCa

User

Posted 10 Sep 2024 at 18:25

Thanks for your update Phil, I hope the rest of your chemo goes well and you in fact can say ‘Onwards and Downwards’ when you’re finished and you get your next PSA Test!😊

User

Posted 11 Sep 2024 at 07:54

The chemo is doing its thing then.. and only four more to go, you're getting there.

Keep going Phil, best wishes.

Kev.

User

Posted 17 Sep 2024 at 12:51

Thanks guys.

Having a down day today . I had to phone chemo nurses as I’ve had diarrhoea since last Thursday. It only happens after a proper meal not breakfast or a light lunch. They told me to try Loperamide. 1 tablet 30 mins before my meal. We are out tonight at the theatre with a meal before 😬… So hoping the pill works..!

As I was a bit down this morning I forced myself off my arse and did some painting in the hall and stair well. Might need a short nap before we go out later 😴

Metal mouth is much better now. Got plenty of ice poles ready to take for my chemo next Wednesday.

We have a wedding in ilfracombe Saturday week , so a few days after my chemo. So gotta do everything I can to be ok for it. We are there all day and staying at the venue for 2 nights, so I can slip off if I need a little rest. We have 2 nights after that in Appledore and the 2 nights in Exmoor at friends. So fingers crossed I’m not too rough.

Cheers guys

Phil

User

Posted 17 Sep 2024 at 17:49

We all have down days Phil, so don’t beat yourself up about it, but decorating?…that’s extreme🤣🤣🤣

I hope you enjoy the wedding and short break after it.

Take care,

Derek

User

Posted 18 Sep 2024 at 20:32

Goalhanger / Phil,

Take good care of yourself.

JedSee.

User

Posted 19 Sep 2024 at 17:39

Just a quickie: had my Degarelix injection today and bloody hell does it hurt. This is the worst I’ve ever had it.

Still feeling so ridiculously tired. I just want to curl up in a ball for 3 months and wake up when the chemo side effects are wearing off. Just want to go bed now , I’m not even hungry ( it’s 5.30) Wonder how long I’d sleep for…?

Just needed a moan 😊

Cheers

Phil

User

Posted 19 Sep 2024 at 20:28

I had my Degarelix yesterday or the Devils Semen as I call it , mine is sore , red and burning today too .

At least we know the unpleasent injection site effect only lasts a week , six more for me not that I am counting .

Best wishes

Mike

User

Posted 20 Sep 2024 at 10:40

Cheers Mike. Only 6 more , that’s great. I’m on it for life now…. Wish they’d do a version that could last 3 months…

I went to bed at 6 and slept through till 10 this morning.

Phil

User

Posted 20 Sep 2024 at 12:55

I was changed from Prostap to Degarelix becuase my Testosterone was 1 , remains at 1 with Degarelix , asked to change back ,was told no Degarelix is better for me ??'

Glad you had a good sleep ,I slept from 1am to 6am and considered that a good sleep🧐.

Best wishes

Mike

User

Posted 20 Sep 2024 at 19:47

I started with Prostap and it did the job but seriously messed with my mind. So when I had to go back on it after the radiotherapy didn’t work I asked for anything else. I tried Zoladex but that didn’t work so we did try the Prostap again but that didn’t work either. So by default I ended up on the Degarelix, which didn’t work either hence the chemo but my consultant has kept me on the Degarelix anyway.

Been tired all day and seeing how long I can hang on before I need to got I bed. Don’t usually feel this way in my 3rd week after chemo. 🤷‍♂️

I always get a good nights sleep as I take 15mg Mirtazapine . Usually at least 8 or 9 hours. I came off it a while ago but couldn’t get to sleep so went back on the lowest dose.

take care

Phil

User

Posted 20 Sep 2024 at 21:40

Phil,

Prostap really messed with my mind to the point I simply couldn’t function, but sertraline sorted that out.

I think all these ADT treatments are as bad as each other for what it does to your body and mind, yet some men seem to have zero or little side effects🤷🏼‍♂️ I’m certainly glad I’m off the poison for now, I only hope it’s the done the job it’s suppose to🤞🤞🤞

The new treatment of 5 sessions of high dose RT without HT seems to me to be a great option for those that can have it.

Sorry you’re having such a tough time of it Phil, I hope things get easier for you.

All the best,

Derek

User

Posted 25 Sep 2024 at 16:46

So nearly finished my 7th chemo. All going ok although was well over an hour late starting. The chairs in the waiting room are not as comfy as in the chemo infusion dept.

Had 2 large ice poles and no hot tea this time. Just a kitkat.… 😁 Nurses here seem ok with coming off the daily steroids. Little bit surprised as I’ve never heard of no steroids during chemo except the super dose either side of the chemo day.

Anyways off home soon . Got my haircut tonight although it’s really not grown much. But it hasn’t fallen out yet 👍

We actually went out for breakfast this morning with friends and I had 2 poached eggs on toast and nearly finished it. Eggs and toast still taste ok. Which is more than I can say for the kitkat I just had which tasted decidedly odd…!

Im waiting on my PSA from yesterday so I’ll post on here when it turns up. Fingers crossed it’s gone down 😬…

Cheers guys,

Phil

Edited by member 25 Sep 2024 at 16:48 | Reason: Not specified

User

Posted 26 Sep 2024 at 10:12

Well got my bloods results for yesterday and the time before.

PSA down a little from 13.39 to 12.37, so not much but it’s downward.
As I got a full blood results list instead of just PSA one I can see the other tests this time.

All looks ok except the Alkaline Phosphatase which is part of bone profile. My reading 3 weeks ago was 126 which was within limits but this time it’s it’s nearly doubled to 239 and is flagged up.
I’ve done what I shouldn’t and Googled it and a couple of hits say it could indicate mets that are chemo resistant. Liver function tests all within limits.

So obviously a little worried now. Has anybody any deeper knowledge than me on these readings? I have more readings on the results list.

I might start a new thread on this !

Cheers

Phil

Edited by member 26 Sep 2024 at 10:13 | Reason: Not specified

User

Posted 01 Oct 2024 at 12:20

Well here we are 6 days after my 7th chemo. Feeling really rough, worst ever. So tired im sleeping 14 hours at night. Got my little cough back which doesn’t help plus the horrible mouth taste. I’m just managing some muesli for breakfast then that’s about it whatever I try it makes me heave. Lost quite a bit of weight though.
Hoping I start to feel better soon.

take care

Phil

User

Posted 01 Oct 2024 at 12:30

I'm so sorry to see that you're struggling Phil. It must be awful. 😟

User

Posted 01 Oct 2024 at 13:56

Hope you soon feel a bit better Phil , at the moment if you fancy something to eat or drink then go for it and spoil yourself .

Best wishes

mike

User

Posted 01 Oct 2024 at 14:10

So sorry to read this Phil, it’s just so unfair isn’t it. You are in our thoughts

Leila.

User

Posted 01 Oct 2024 at 18:40

Sorry to read all this Phil. Really feeling for you and sending strength. I’m sure when it comes to it I’ll follow the same path , but I do have reservations about these treatments in QOL. Your results were moving but you were well in yourself and active and traveling. I just hope the Chemo works as it causes so much harm at the same time. Best wishes friend

User

Posted 02 Oct 2024 at 09:46

Hi Phil

Sorry to read the chemo is knocking you about a bit,I found that the more sessions you have the greater the side effects,but you are almost there and you will have a good rest period after the last session.

All the best Phil

User

Posted 03 Oct 2024 at 14:39

Really sorry to read you’ve been having such an awful time with the effects of chemo and meds Phil. Thinking of you and hope you start picking up again soon.

Ange x

User

Posted 03 Oct 2024 at 17:18

Thank you everyone for your kind words and wishes 👍

Day 8 and still feel absolutely crap. Sleeping most of the day and then all night as well . Metal mouth still there and most days I’m only having some muesli at breakfast then nothing else. So still losing weight. Lost over a stone now and nearly at where I was when I started the chemo.
Trying to drink lots of water but that tastes disgusting too. To be fair I never drank water before. Just hope it’s been worthwhile … 😬

Kudos to you guys that did all 10 sessions, you are my heroes. I’d just like to sleep till well after my 10th. 🤣 And the thought of doing it all again gives me the shakes…

My wonderful wife is carrying on with decorating the hall and lounge , while I’m sent to the settee to watch … she is my Angel.

She’s out clothes shopping now with a friend and I’m gonna try to watch the whole Spurs game without flaking out. Well I’ve just had 3 hours kip…!

Take care everyone, let’s all hope they come up with nicer treatment soon and then a cure for all cancers !!!

Phil

User

Posted 03 Oct 2024 at 17:29

Originally Posted by: Online Community Member

My wonderful wife is carrying on with decorating the hall and lounge , while I’m sent to the settee to watch … she is my Angel.

Mine is more like an angle, a bit obtuse.

(Only kidding darling.)

User

Posted 03 Oct 2024 at 18:58

Mine is more like an angle, a bit obtuse.

(Only kidding

That made me laugh 😆

User

Posted 15 Oct 2024 at 09:51

Well here we go again. Blood test today and a quick call from chemo department to see if I’m ok. Chemo tomorrow.

Still feeling absolutely crap , fatigue and metal mouth not easing off, and still got the nasty cough.

Im really hoping I’m not going through this for nothing. I’ve even had to borrow a fold up wheelchair for today as the blood test has to be done in oncology which is a goid walk from the car park and I just can’t do it at the moment.

Take care guys

Phil

User

Posted 15 Oct 2024 at 10:40

I'm so sorry that the Chemo is taking such a toll. Keep battling on Phil. You'll get there in the end, mate.

User

Posted 15 Oct 2024 at 12:26

Sounds like you're going through the mill a bit there Phil. I hope it eases up very soon. Is it just one more session after tomorrow?

Ian.

User

Posted 15 Oct 2024 at 14:34

Hi guys. Just spoken to chemo dept and as I’ve not recovered enough they’re postponing tomorrow’s chemo till next week. That’ll be my 8th of 10.
They’re going to ask my consultant about reinstating the prednisone daily . See him the day before my next chemo.

Cheets

Phil

User

Posted 15 Oct 2024 at 15:26

Sorry to hear that you're having such a rough time Phil.

Hopefully you can recover enough for next week.

Cheers,

Kev.

User

Posted 15 Oct 2024 at 21:07

Hi Phil

Like you say Phil you don't mind this agony as long as there light at the end of the tunnel.

I've been in A&E for 7 hours today in agony with my ribs,still waiting for pet scan appointment and have a 8mm stone in my kidney waiting to make an appearance!!!phoning onco secretary in morning for answers,enough is enough,not looking forward to going to bed tonight,codiene here I come.

Take care Phil

Notification

Join the online community now.