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Why can’t they treat my Lymph node PCa

User
Posted 27 Feb 2024 at 11:38

Hi guys. Next consultation is only hours away now so been a bit fretful. It’s a 4pm appointment so will likely be late as well . 
Hoping for the miracle of a steadied or reduced PSA but not really expecting it. 
Not sure what we’ll do if it’s gone up again. Dont know how far it will have to go up before Docetaxel is brought into play. 
Just gotta wait now . Trying to keep busy and not think about it 😬… 

Take care chaps

Phil

 

User
Posted 27 Feb 2024 at 17:00
Fingers crossed 🀞 friend
User
Posted 27 Feb 2024 at 19:12

I’ll be back on tomorrow. Not good news at the hospital today. 

Phil

User
Posted 27 Feb 2024 at 19:35

I'm so sorry mate. I despise this damn disease.

Edited by member 27 Feb 2024 at 21:06  | Reason: Delete bad language.

User
Posted 27 Feb 2024 at 21:35

I’m really sorry to hear that Phil. It’s easy to get a bit blasé about PCa when surrounded by other people with the same thing, but it’s actually s***. Update us when you’re ready pal.

Ian.

User
Posted 27 Feb 2024 at 23:17

So sorry to hear this Phil.  I’m glad you were able to go to your grandson’s Christening in Jersey with your family and friends prior to your appointment and not after.  Thinking of you. Ange x

User
Posted 28 Feb 2024 at 16:35

Thinking about you and yours Phil from us both. 

Edited by member 28 Feb 2024 at 16:55  | Reason: Not specified

User
Posted 28 Feb 2024 at 17:04

Thank you for your messages. It really helps knowing you guys understand the mental side of this damn disease. 

So the update. PSA gone up by just over 1 to about 6 I think. T is up too but he didn’t even tell me. He said he’s not Interested in numbers anymore as long as I feel ok. Which I do. 

So he’s changing my Zoladex to Degarelix. First injection next week and he said it will be a super boost , with 3 injections in the stomache. Next appointment 4 weeks. 

He also said if this doesn’t work he’s suggesting Orchidectomy. Which I was gonna ask about anyway. It’s a big mental issue isn’t - bloody hell I'm still digesting it… 

So we both had a little cry in the car and had to come home to phone the boys. That was hard. 

But I mustn’t let this get to me or it ruins the rest of your life. 

It has made me think harder about when I go and how my lovely missus will be on her own. I can’t think about her meeting anyone although i obviously want her to be happy. She’s 60 so could have another 30 years with someone. I do find that hard as I’m sure you all do because we’ve all thought about going into our dotage together and that’s not gonna happen now - oops a few more tears…

Just had a coffee and 2 kitkats 🀣 because I can … !  

Take care everyone, ‘Enjoy yourselves, it’s later than you think’ 🎢 

Phil

Edited by member 28 Feb 2024 at 17:06  | Reason: Not specified

User
Posted 28 Feb 2024 at 19:21
Okay, not ideal news but...

- the change to degarelix could stop this in its tracks and lead to a lovely big drop in PSA

- if you ever get to the stage of discussing orchidectomy, we can talk it through on here first - sometimes it is absolutely the right thing to do but very much depends on what your Testosterone level is by then

- they say the people who have been most loved are the ones who are able to love again

- KITKATS SHOULD NEVER BE PAIRED WITH COFFEE - DEFINITELY A TEA THING .

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Feb 2024 at 19:43

Sorry to hear this Phil, but as Lyn says, let’s hope the injections stop it in its tracks. One step at a time mate. You may never need to consider Orchidectomy, so try not to overthink it now. Lots of people on here who can offer far better advice than me as I’ve not even started treatment yet, but I’m thinking of you pal πŸ‘

User
Posted 28 Feb 2024 at 22:08

 they say the people who have been most loved are the ones who are able to love again

 

Beautiful words , and I understand but still hurts… how silly of me πŸ˜₯

 

User
Posted 28 Feb 2024 at 22:22

Sorry to hear this Phil, I will keep my fingers crossed for you that switching to degaralix does as Lyn says.

I would be very interested in a discussion about orchidectomy.

Don’t agree with Lyn about the Kit Kat though, they go VERY nicely with a triple shot Costa Flat WhiteπŸ˜‹

All the best,

Derek

User
Posted 28 Feb 2024 at 23:19

Hi Phil,

Give the degaralix a go, as Lyn says it just might do the trick, as for the orchidectomy I can’t really comment, but it’s worth keeping on the back burner and discussed.

Now, more importantly πŸ˜‰ young man, you have a lovely wife, and she will stand by you, and you her, that’s so special.

The other thing, how can you possibly eat kitkats with coffee, tea  dear boy, tea it’s the only thing  to have with chocolate. 
Coffee, on the rare occasion I drink it needs to be strong, black  and on its own. 

Lots of support on here Phil, we are rooting for you. 

Leila 

 

 

User
Posted 29 Feb 2024 at 00:40

Originally Posted by: Online Community Member

 they say the people who have been most loved are the ones who are able to love again

 

Beautiful words , and I understand but still hurts… how silly of me πŸ˜₯

 

Also, in my experience, men are more likely to move on and have new partners and women less so. Obviously this is a generalisation but so much of second relationships is about companionship and intimacy (emotional not necessarily sexual) and I suspect that women are more likely to find companionship / intimacy with other female friends while men find it hard to be companionable or intimate with their mates so look for romantic / sexual relationships instead.

My mum & dad were marvellous together and I was devastated when he introduced me to his new partner less than 6 months after my mum died. Then, a few years later, she died suddenly and, within 6 months, he was telling me about his new new partner. It took a while for me to understand that it is no measure of how much he loved mum, he simply needs that closeness with someone. The super-strength Caverject helps, of course 😳

I suppose what I am saying is that a) this is a long way in the future for you and really not worth worrying about now; b) your lovely wife is not as likely to replace you as you might imagine and c) if she ever did, it would be testament to how much she loved you  

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 29 Feb 2024 at 09:52

Thank you for your lovely messages. It really helps. 

As for the kitkat, well each to their own 🀣 but for me coffee and chocolate is right , tea with hot cross bun or biscuits ….. 😁

My coffee now is Decaf and black. How many ways can cafe staff not understand that. Why is black now Americano 🀷‍♂️. But when I then say Decaf Anericano they say do you want milk with that 🀦‍♀️… 

Does my head in …. 

Coffee anyone ? 
Phil

User
Posted 29 Feb 2024 at 10:38

Morning Phil,

I know nowt about these posh coffees. I went to the cafe in Tescos and asked for a mug of coffee. The girl behind the counter looked at me in disbelief. I ended up getting a large Cappuccino. Which was a bucket full of milky froth. Very nice, but more like a pudding than a beverage. 😁

User
Posted 29 Feb 2024 at 12:55

Costa Flat white has 3 times the amount of caffeine than Starbucks have. I only have one caffeine drink a day and it makes me feel great….just for a little while anyway.😊 I agree with you about Cappuccino though, it’s all just froth. Latte is all just milk. 
Amazing how this post has turned in a discussion about ‘tea and cakes’🀣🀣🀣

User
Posted 29 Feb 2024 at 12:59

Amazing how this post has turned in a discussion about ‘tea and cakes’🀣🀣🀣

I think I meant to put my coffee comments on the Pub thread 🀦‍♀️… 

Id love a full caffeine coffee but it gets my bladder going. I have decaf tea too. They said I have radiation damage in my bladder so taking Tamsulosin and Solifenacin for it and does help. 

Phil

 

 

User
Posted 01 Mar 2024 at 20:22

Thank you Lyn for your always informative and fascinating insights. Like most people I can be rational but sometimes emotion just over-rules…. 

Phil

User
Posted 01 Mar 2024 at 20:48

I'm with you Phil!

of all the things I should be worrying about, I mostly worry about who my wife will end up living her remaining 30 years with.

Sad.

User
Posted 04 Mar 2024 at 11:47

Originally Posted by: Online Community Member

I'm with you Phil!

of all the things I should be worrying about, I mostly worry about who my wife will end up living her remaining 30 years with.

Sad.

 

It is funny really as we wont even be here to worry. Just gotta hope we carry on for a few more years yet 😊

Before i do go I’ll make sure my boys are going to look after the wife and make sure she’s ok although only one of them lives here in the UK the other on lives in Jersey. My daughter in law in the UK is magic and i know she’ll always be there for my wife.

It is an odd feeling as i will probably go before my Mother in law as she is only 18 years older than me  …. My dad was a B*stard to me all my life but he managed to get to 94 which i must admit to feeling is a bit unfair …. πŸ™„

Anyway just waiting till Thursday for my first Degarelix injections and hoping it will give my system a boost and get the Abi working for a living !

Also having just moved back to Mirtazapin i am feeling much brighter and sleeping better. I also seem to have much more energy although my Consultant changed the Steroid to Dexamethazone because of my sleeping/energy levels.

Take care everyone,

Phil

Edited by member 04 Mar 2024 at 11:51  | Reason: M

User
Posted 07 Mar 2024 at 15:01

Ok so first Degarelix injections today. CNS nurse did it and was painless although both sites now a bit sore. Can handle that , just hoping it helps give the Abi a kickstart.

Is it too late to start praying now 🀦‍♀️… 

Last few weeks have noticed an increase in my appetite with a corresponding increase in girth. Gonna bring my exercise bike into the conservatory so I use it more. And gotta stop eating sh*t… and possibly reduce the wine intake πŸ€”. I cancelled my gym membership as I’d stopped going due to back issues and feeling a bit down in December/January. So also got some weights I’m gonna bring in too. 

See consultant in 3 weeks 😬

Take care peeps, 

Phil

User
Posted 07 Mar 2024 at 16:23

It’s great to hear you sound more positive Phil.  Keith and I are praying for you.  Keep moving forward, you’ve got this!!

Ange x

User
Posted 07 Mar 2024 at 16:54

Originally Posted by: Online Community Member

It’s great to hear you sound more positive Phil.  Keith and I are praying for you.  Keep moving forward, you’ve got this!!

Ange x

So many things we still want to do yet ….

I must say the injection sites are actually quite painful now. May have to take a painkiller. Never had that with the Zoladex. 

Phil

User
Posted 21 Mar 2024 at 14:51

So just copied this from my post in the Pub thread . Dont want to lose this thread 😬

So didn’t bother with a blood test in the end as was still not sure about consultation date. 
I did email the CNSs and they got back very quick and said no appointment has been booked so they’ll bring it up with my consultant in their meeting with him. 
She suggested I get the blood test done anyway as a walk in so going in Friday. 
Then booked my next Degarelix for 3rd April- my birthday 🀣. But GP says not received my consultant letter yet so can’t authorize getting the Degarelix. So back onto CNS and they were super quick and said they’d send me an email copy plus one to the GPs. So all sorted , or nearly, just my consultation date…  And then after that the bloody letter came in the post 🀦‍♀️

 

After our lovely day Tuesday I was on a bit of a downer yesterday 🀷‍♂️. I went to badminton but finished early as I just didn’t feel like it. I’d had words with the missus in the morning (very, very unusual!) and apparently I’ve been on a downer for a week or so. If I was at the Pub I’d have gone in the Public bar and sat in a corner nursing a pint of Guinness. 

 

So gotta get my mojo back , no good being like that. Gotta enjoy our days left..

 

So this morning booked flights for a wedding we have in the US in August . Got loads of Avios and a companion voucher so booked PE out ( daytime flight)(can’t do economy any more - id end up killing someone)  and Business Club Suite home as it’s a night flight. Club suite is soo much better than the old BA business. And only cost just over £600 for both of us. Result πŸ‘ . Flying same flights as our boy and his missus as he’s Groomsman so that’ll be nice. We have a week out there so although we’ve done that area before we’ll try to see bits we’ve not seen. 

By the way I have noticed my appetite is insatiable at the moment and I’ve definitely developed the fat face. Presumably it’s the Dexamethazone . So need to start exercising some self control over my eating… straight after my next pack of fizzies ! And maybe another biscuit 🀦‍♀️

 

So, take care guys, I’m afraid Louis Armstrong was wrong when he sang ‘ we have all the time in the world’  it’s more like ‘ Enjoy yourself, it’s later than you think’ by Prince Buster - 🀣🀣

 

Phil

User
Posted 25 Mar 2024 at 13:32

Hi chaps. Well got my Degarelix letter sorted finally so they sent the prescription to my chemist (where my missus works) so got that ready πŸ‘.

Then I got a call in response to my email regarding my appointment which was due this week but not heard anything. The nurse said go for the blood test and they’ll sort the appointment. So blood test Friday then another call today to say my appointment is this Thursday . So all sorted in the end. Lucky my Oncology dept will take walk ins if needed. 
Also had to ask then to arrange more Abi and Dexamethasone as I run out Thursday. 
So as always a bit anxious and really hoping my PSA has stopped rising now…. Gotta be positive… 

So to stop myself worrying I went out and cleaned the car for 3 hours.  As its white it needed the toothbrush treatment along all the creases, joints etc as it was green mouldy. It’s not a mouldy old wreck but I’ve not don’t it for months ….! 

Take care buddies. 

Phil

User
Posted 25 Mar 2024 at 13:36

Good news Phil, and good luck for the blood test & appointment πŸ‘

User
Posted 25 Mar 2024 at 13:36

Stay positive Phil. 

I'll drop my car round later πŸ‘πŸΌ

Kev.

User
Posted 25 Mar 2024 at 13:51

Thanks guys. 
My neighbour already beat you to it … she said she’ll bring hers over later . I looked at our now huge driveway and said there’s no room… 

I was gonna start my bike yesterday but battery was flat so that’s been on charge overnight so might pop it back and give it a go. It’s an old ‘73 bike so no electric start … so see how I do … ! 

Cheers

Phil

User
Posted 25 Mar 2024 at 18:59

Just dropping my car round in the morning. 

User
Posted 25 Mar 2024 at 19:02

Originally Posted by: Online Community Member

Just dropping my car round in the morning. 

 

Oh no , what have I started… I’ve run out of car shampoo.. 🀷‍♂️

User
Posted 25 Mar 2024 at 22:24

I’m lucky, my son is a fanatical car washer, has 3 different buckets, pressure washer and all the intricate tools required for a professional valet. My wife and I get ours done once a month…payback time😊

 

User
Posted 26 Mar 2024 at 09:27

Decho, you lucky man 🀣..

My youngest is like that and when him and his now wife lived with us he always helped me with the cars. He has a Lotus Elise so it was always immaculate.

Ive only got the one bucket and I know I should buy the one with the grit trap in it 😁.

Remember back in the late ‘70s early 80s people used to over polish their cars and go through the paint. 

The first time I took my missus out to meet with my friends the Pub was having a 1600E meeting. She was 15 and very shy and still remembers that evening. πŸ₯° 

Phil

User
Posted 28 Mar 2024 at 11:56

So latest update from this morning. 
PSA up to 8 from 6 , T is slightly down from 1.4 to 1.3. He says he’s not so worried about the PSA but wants the T down. Give it another 4 weeks on the Degarelix and we’ll see.

Also wants another CT and bone scan in 2 weeks. 

Mentioned that we’ll give this a go then if we need to he wants me to have the Orchidectomy. No choice really, if I want to give myself a few more years. 

Do feel a little bit down but was expecting it really. Just kinda wears you down sometimes.

Take Care guys, good luck to you all on whatever treatment plan. 

Phil

Edited by member 28 Mar 2024 at 11:57  | Reason: Not specified

User
Posted 28 Mar 2024 at 12:12

Originally Posted by: Online Community Member
Do feel a little bit down but was expecting it really. Just kinda wears you down sometimes.

You're bound to feel low Phil. You're one of my cancer heroes on here. I truly admire your resilience and upbeat attitude. Does the scan interfere with your Jersey trip? If not concentrate on rocking that island.

All the best mate.

 

Edited by member 28 Mar 2024 at 12:13  | Reason: Typo

User
Posted 28 Mar 2024 at 15:23

Hi Phil

It's normal to be down beat I've been there many a time,but there's always other options,be open minded and positive.

Sending good vibes.....Phil 

User
Posted 28 Mar 2024 at 15:24

You're bound to feel low Phil. You're one of my cancer heroes on here. I truly admire your resilience and upbeat attitude. Does the scan interfere with your Jersey trip? If not concentrate on rocking that island.

I'm really no hero believe me. It’s just about surviving as best we can. I had a lot of sh*t as a child and I suppose it probably makes you more resilient that you might’ve been. Just keep bouncing back up like one of those Weebles… 🀣

When they phone re the scans I will have to tell them we are away in Jersey and the next weekend away in Exmoor. NOTHING interferes with our holidays… πŸ‘

Phil

 

 

User
Posted 28 Mar 2024 at 17:39
Mate you’re a Trojan. Keep strong and enjoy those hols. I know how hard it all is.

An Orchidectomy ? They’d struggle to find mine I reckon πŸ˜†πŸ˜†. Chin up and strength friend x

User
Posted 28 Mar 2024 at 18:08

Sorry to hear that Phil. 

Hope you can stay positive. 

Kev.

User
Posted 02 Apr 2024 at 09:58

Thank you guys for the lovely thoughts, really appreciate it. Especially as you lot really understand what it’s like. People outside of this special circle of friends just don’t get it. If I say my latest PSA is so and so then I get a reply that they’re suffering too with their lumbago or some other ‘minor’ ailment. 

I suppose whatever each of us have it is the worst thing to deal with. That’s human nature isn’t it. 

So had my CT scan now and just waiting for the bone scan on 19th. Funny thing is part of me just wants the Orchidectomy now to get it done and see if it helps. 

I’m 69 tomorrow so no spring chicken. And I realise I’ve been very lucky in my life, especially with my lovely wife and 2 boys. Many people don’t have that and it makes me feel a little guilty when I see children suffering especially as I’m particularly sensitive to emotions with the old HT… 🀷‍♂️.

Anyways, hope you lot are doing ok , Summer is coming and the warmer weather, yippee. Can get some planting done soon in the new flower beds back and front. πŸ‘

Out to Jersey again Friday. Shame easyJet don’t have air miles , we’d have loads 🀣. Hopefully catch up with KevT at Luton. 

Cheers

Phil

User
Posted 02 Apr 2024 at 12:17

I know you won’t think so Phil, but you’re amazing!! Keep the positivity going and enjoy everything you do.  Have a great time with your family at home and in Jersey.

Ange x

User
Posted 02 Apr 2024 at 12:41

Originally Posted by: Online Community Member

I know you won’t think so Phil, but you’re amazing!! Keep the positivity going and enjoy everything you do.  Have a great time with your family at home and in Jersey.

Ange x

So true Ange, Phil you are so strong and it really helps us all get through this. Living every day to the full is the way to go and like you I find travelling gives me a reason to stay positive. Enjoy your trip to Jersey, I’ve only been home for 3 days, it’s wet and cold in Scotland and I can’t wait to get back out to Fuerteventura….out happy place😊

Need to lose some weight first though as I consumed too many mojitos last time🀣🀣🀣

User
Posted 02 Apr 2024 at 14:05

Happy birthday for tomorrow Phil. Looking forward to meeting up at the Airport. 

Thanks for the tips re eating out in Jersey, much appreciated. 

I agree with Decho, travelling also gives me something to focus on and look forward to. 

Good luck. 

Kev.

Edited by member 02 Apr 2024 at 14:12  | Reason: Added note

 
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