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

User

Posted 16 Oct 2024 at 13:59

Originally Posted by: Online Community Member

Hi Phil

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

Take care Phil

Hi Phil.
So sorry to hear your in hospital with your ribs. Is it the PCa ? Hope you get the kidney stone sorted too. I’ve heard how painful they can be. 😬

Yes we need to know what’s going on and what they’re hoping to achieve with treatment.

Got a call from Oncos today and they think I may have an infection somewhere. Wanted me to go to A&E . The missus said no . After making all the effort to stay clear of people they want you to go mix with a load of sick people. So he said he’d try to sort something out and get back to us….!

One of my liver readings has doubled too so he wants that checking.

Be thinking of you and hope you get sorted out.

Good luck

Phil

Edited by member 16 Oct 2024 at 14:00 | Reason: Not specified

User

Posted 16 Oct 2024 at 18:07

Update: don’t need to go to hospital but keep monitoring temperature and any symptoms of a water infection call chemo nurses.

Chemo next Wednesday as rearranged.

Onco is ordering an MRI and bone scan. I presume to see status in case I have to stop the chemo.

Cheers

Phil

User

Posted 22 Oct 2024 at 10:05

Update: Ended up in A&E early Sunday morning with serious pain from constipation. Ambulance came and administered paracetamol then morphine. At hospital they fitted a catheter and 1 litre of urine came out. Which seemed to release the constipation and I made quite a mess, quite a few times.

We had a special room for people with chemo and weakened immune systems. Which is great except they got someone else come in on chemo and needed the room. So they kicked me out Sunday afternoon.

Still felt rough so the missus phoned chemo nurses and district nurses. Both very helpful. So yesterday we go some complan. Ugh… yuk. Only way to take it with metal mouth is straight down, which I did but followed by 15 minutes of gagging.
Had to call out district nurse last night as catheter was painful. Guy came and sorted it 👍.

So today blood test and consultant f2f . No way am I having chemo tomorrow but the chemo nurses said they’d really like to carry asap as bloods are all showing good results.

Gonna ask my consultant today about the Prednisone and whether I should go back on it as I believe it’s to help with side effects of the chemo.

Got me wheelchair ready as I’m very unsteady on my feet now.

Hope you guys are all cracking on ?

Take care

Phil

User

Posted 22 Oct 2024 at 10:26

Bloomin' 'eck, Phil. You're going through a hell of a rough time. At least they're pleased with your blood results. Best of luck with your tests and f2f today. I will be thinking of you mate.

User

Posted 22 Oct 2024 at 13:23

Hi Phil,

Adrian sums it up well. We've got our fingers crossed for you too.

Kev.

User

Posted 22 Oct 2024 at 13:39

Everything crossed 🤞 for you too Phil.

Ange & Keith x

User

Posted 22 Oct 2024 at 13:55

So sorry to hear this mate. You’re a trooper 💪💪

User

Posted 22 Oct 2024 at 14:34

So sorry to read this Phil, hope your situation improves very soon.
Leila

User

Posted 22 Oct 2024 at 15:36

Keeping everything crossed for you Phil 🤞🤞

Jackie & Al

User

Posted 22 Oct 2024 at 18:20

Thank you everyone, so lovely to hear from you all .
Just back from hospital. Consultant says I definitely shouldn’t feel like this. So he was surprised A&E didn’t prescribe oral antibiotics at the weekend so he’s done that . Started them already. Started me back on Dexamethasone steroid 1 daily and has postponed the chemo till I can deal with it. All the bloods are showing good results so that’s good.

Catheter coming out Monday morning and a scan in the afternoon to make sure all is working ok.

Had some paracetamol as the catheter still a little uncomfortable.

Hopefully will feel a little better in a few days 👍

Take care everyone

Phil

User

Posted 23 Oct 2024 at 18:41

So, a little more information:

Chemo nurse called and also Palliative Nurse who I’ve been referred to.

My C-reactive protein (CRP) is 115 which is very high and indicates an infection or inflammation. The palliative nurse also said my phosphate is very, very low and she’s coming to see me tomorrow. She told my wife I’m a very poorly man ( as she does the phone for me while I’m crock) … Have to admit I shed a tear when she told me…. 🥴😢

Got to say although we do seem to be getting dribs and drabs of information they are all calling us which is encouraging and at last like someone is listening.

So let’s see what tomorrow brings 👍

take care, look after yourselves

Phil

User

Posted 23 Oct 2024 at 20:26

Phil this is so sad. It only seems like yesterday you were healthy and active and restoring bikes etc. Just doesn’t seem right nor fair. Everything is crossed for you ok

User

Posted 23 Oct 2024 at 21:06

Originally Posted by: Online Community Member
Phil this is so sad. It only seems like yesterday you were healthy and active and restoring bikes etc. Just doesn’t seem right nor fair. Everything is crossed for you ok

Cheers Chris, looking forward to feeling fighting fit again 🤣

Take care

phil

User

Posted 23 Oct 2024 at 22:23

Phil, sorry to see things are not going well. I can sympathise with the pain from constipation. What is painful with the catheter, instilagel, hydrocaine or optilube can help if the eye of the penis is sore,it is available without prescription but you obviously need to speak to your medical team. I have found that a catheter slightly in the wrong position can be extremely uncomfortable, again a bit of gel can ease the discomfort. I also found the bigger catheters are like having toothache in the penis and not much helps with that. Being hydrated for the removal will help, I have had around a dozen urethral catheters, but I have never had a painful removal. Remember to relax.

Hope things improve soon

Thanks Chris

User

Posted 24 Oct 2024 at 13:19

Oh Phil, I’m so sorry you’re having such a rough time at the moment. All I can do is send you my thoughts and hope things improve for you soon.

Derek

User

Posted 24 Oct 2024 at 13:43

Thanks guys.

Constipation was utter agony and the morphine only dulled it.

Yeah, with the catheter it can be difficult to get me winkle in the right place. Ive been taking a couple of paracetamol for that. Hopefully I'm ok when they take it out Monday. I’ll make sure i’m well hydrated.

Had a visit from the Palliative Nurse this morning . She was really good and explained lots of stuff and even applying for a blue badge for us. Seems i have quite bad anaemia but not bad enough for a transfusion. Also my potassium is very low so i might need some pills for that, she’s checking with my GP.

Gave me some tips on what to try to drink to help build me up. Looking forward to a rest from the chemo although i know ill have to resume at some point.

Take care guys,

Phil

User

Posted 25 Oct 2024 at 18:16

Oh Phil, Just seen your post, I hope the discomfort and pain gets to be managed soon. Keep strong me dear, our thoughts are with you and your lovely family.
Leila

User

Posted 27 Oct 2024 at 10:11

Ding Ding round 386 Phil, keep fighting mate

User

Posted 28 Oct 2024 at 17:55

Just a quick update: Catheter removed this morning . Everything working ok 👍 Fingers crossed it stays that way.

Started eating a bit more as the chemo mouth wears off. Still no where near normal but better. Had a very little piece of Shepherds pie last night..

Had a call from palliative nurse today to see how I am. She’s coming to take blood on Thursday. That should show if the potassium, anaemia and CRP are at better levels.

It’s just annoying that I’ll have to do the chemo at some time again. Also still waiting for bone scan. Then in 3 weeks see my consultant again to see if everything is ok with CT scan and bone scan.

It’s just so good to feel a bit better. And to sleep tonight without a wee bag…

Take care everyone

Phil

User

Posted 28 Oct 2024 at 18:00

Glad to hear you are feeling a little better hopefully you improve as the days go on

best wishes

Ann

User

Posted 29 Oct 2024 at 10:54

So pleased to hear you’re feeling better today Phil. Hopefully you’ll have a good night’s sleep too tonight.
Take care and all the best going forward…

Ange & Keith x

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Why can’t they treat my Lymph node PCa

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