Why can’t they treat my Lymph node PCa

Hi Guys, its me again… 

Just got back from a night away in a swanky hotel with the missus for her 60th birthday. We set off home straight after breakfast as she is working this afternoon. Well we got about 200 yards and i had to stop as i felt sick, and ended up barfing my full English over the Rectory wall with a builder looking on. He’s probably thinking I shouldn’t have drunk so much last night , which I didn’t by the way. The missus drove home. Ive been getting this a little while now, not every day and not often fully sick. I will be mentioning it to the consultant next Tuesday in case its related to one of the pills I’m taking.

I’m also getting some fatigue like I’ve never experienced before even on the Prostap or Zoladex. So exhausted i can barely walk and just need to lay down for a couple or 3 hours. Not every day but fairly often now. I’m hoping this will pass eventually but I’ll mention this also. I really don’t want to have to change off the Abi now as it’s reducing the options i have left. It’s getting me down a bit although wont mention this to the missus.

Hotel was lovely by the way, service was perfect, room was excellent albeit it a bit noisy ( thanks to the upstairs guest who decided to start talking at 3am and TV on loud at 6am). It is in a Suffolk country village renowned for its medieval architecture and all that stuff. We had half a day and the night and it was interesting but we are city people really. We love the buzz of a city and we also love the sea/water. We had to dodge all the couples in their funny hats, walking boots and hiking sticks studying the plaques on the walls saying how old the houses were ……. Each to their own 😄. Apologies to those reading who own funny hats, walking boots and hiking sticks 🤣. I probably looked well out of place in my polo shirt, shorts and white trainers…. 🤷

Take care everyone, I’m sure i will be back again with some comments about Life, The Universe and Everything…

Phil

Morning guys, saw my consultant yesterday and my PSA has dropped to 7 from 9.3 2 weeks ago. So well pleased, was prepared for the worst. I nearly burst into tears… in my head I was even thinking about my funeral 🤦‍♀️
Still keeping me on 2 weekly visits and tests for a while yet as Testosterone is still not as low as it should be. So hoping that will drop soon. Only been on the Abi 26 days.

My other readings are all ok so far, like liver and BP so that’s good. Just the random fatigue being the only side effect that I notice. 

Take care peeps
Phil

Congratulations, great news.

Congratulations good news long May it continue 

ann

My fortnightly update : PSA now gone down to 6.1 ( from 7, 2 weeks ago and 9 2 weeks before) so 9 to 6 in 4 weeks not too bad. Feeling very relieved as I was worried the last drop was going to be a blip. 
Testosterone also dropping now , so the Abi definitely doing something. Blood pressure perfect and no other issues to worry about. Still keeping me on 2 weekly checks for a while though. Just a pain going to hospital for blood test, then back again for consultation and then again to pick up more tablets, every 2 weeks. But I’m not complaining, really 😁. Just hoping that things progress so I can get back to 3 monthly checks as every 2 weeks can be quite stressful. 

I did ask about my new lesions , and said I wasn’t sure I should know or need to. She said I don’t need to know , just that the treatment is working. I suppose she’s right really. I’d only worry if it was now in my bones or even elsewhere.

On the grandson front we are still waiting. Due date tomorrow. I just phoned them and they are on the beach having a swim. Hopefully he will pop out this weekend and we can get some flights sorted and be out there Sunday or Monday to see the new addition to our family. Keeping fingers crossed they add Jersey back into Southend airport soon. It’s only 20 mins away whereas Luton is a s*** hole airport and takes over a hour by car (then of course there’s the exorbitant parking fees).

Anyway it looks like the weathers taking a turn for the better now so gotta enjoy it while we can. 24.5deg in my car yesterday…. ☀️ 

Hope everyone is ok out there ?

Take care all of you. 
Phil

Edited by member 10 Aug 2023 at 17:27  | Reason: Added new lesion information.

Brilliant news Phil.  Hope it won’t be too long before you’re on 3 monthly checks.  The arrival of your Grandson will be the ‘Icing on the cake’.  Enjoy some precious time with your family xx

So here we are again. Latest 2 weekly consultation this morning. Knew it wasn’t great news when i saw my main man coming into the room. PSA still at 6 , so not so good. Testosterone is just above 1 and he said he’d like it below 1 . He thought i was on Degarelix so i corrected him that i was on Prostap monthly. Wonder if changing would make any difference ? I seem to doubt it.

Still not feeling any side effects of the Aberitone so that’s good. Still managing 2 hard 2 hour gym sessions a week plus badminton. I do push too hard but i like that feeling afterwards so as long as its not hurting me ill keep pushing.

He has reduced the Prednisolone to 1 tablet of 5mg instead of 2 . Not sure why that is ? Maybe due to my lack of side effects. Keeping me on 2 weekly visits although he was going to go to a month but i will need a new prescription before then so he said come back in 2 weeks. Hoping to see a reduction in the PSA then and moving onto 1 monthly visits. 

So, all in all not feeling so great . Trying not to think of the reasons for the static PSA. Just hoping my PCa hasn’t become castrate resistant. Also wondering what they will do if it stays static next time and what that means. Will they say stick on the Abi, or will they want to try Enza. Also wondering if it’s ok to have static PSA at 6 ? Does it mean the PCa is still growing but very slowly?

Counselling still interesting … She asked me last time if she had 3 pills but i could only have one which would I choose. First pill would stop me thinking of the past, second one to stop worrying about the future, and the third to make me like myself more. I chose the third straight away, and promptly broke down again.. bloody hell she knows the triggers all right. 

Grandson still not popped out , so still waiting to book flights to see him. Got to be soon as she is 2 weeks overdue tomorrow. 

Gonna have a coffee and a sneaky bit of chocolate bar. I think I’m owed that !

Hope every one is doing ok? 

Take care all,

Phil

Well finally we have our little Grandson, Flynn Bailey. He’s so gorgeous, but then I am biased 😁.

Was a difficult birth so ended up with a caesarean but Mother and baby both fine and at home now. He was 9lb 14oz and 53cm long so a bit of a bouncer. He’s actually 4 times the weight I was as a prem baby. 😳

We are flying out Thursday to see him . Hope they get the flights sorted out by then. Can’t wait now… 

Take care everyone, 

Phil

How wonderful, congratulations!

Hi Phil

Glad you had a good time with the family,I know exactly where your coming from when getting home to reality to bloodtests and appointments and preparing yourself for results and what the oncos are going to say,but as long as your feeling well,sleeping got your appetite that's gotta be a good thing,there's not a fat lot you can do what's going on inside you,just keep active,eat a good diet and be positive.

All the best regards Phil 

Going in the right direction. Enjoy the grandchild, the sunshine and always a good book. 

Leila 

Good luck with the Zoladex this time round Phil.  Great to hear that you’ve booked to go to Jersey to see your Grandson and family again, he’ll certainly put a smile on your face, enjoy those ‘special’ cuddles…
Angex

Hi its me again with a quick update. 
Just had a call from the hospital and my PSA has gone down to 4.75 and my T to 1.0 . So Abi and Zoladex working albeit quite slowly. 
To be honest I was expecting it to be bad news so I’m a bit emotional at the moment and quite tearful. No one knows how long it will keep working but I’ve got to just take each day as it comes. 
Off to Jersey tomorrow from Luton… getting a lift there and back as it’s supposed to be chaos in the remaining parking areas. We were booked in the car park which burnt down…. 
Hoping everyone is doing well ?

Phil

That’s good news Phil.  So pleased to hear you’re off to Jersey again.  As you say, a day at a time and keep doing as much as you’re able to do.  I will picture you at your favourite pub in St. Aubin over the weekend.  Take care and enjoy yourselves with your family.

Ange x

So, latest update after my consultation today . PSA has dropped further to 3.99 from 4.75, which is good. What’s not so good is my Testosterone has gone up to 1.5 . 
My consultant is going to try the 3 monthly Zoladex to see if it helps. 

Anyone any thoughts out there ? Presumably if my PSA has gone down that is good but I’m now worried that my PSA may rise due to the T rising . Like a delayed action. 

Should I be worried by the T or just concentrate on my PSA .

As you may have guessed I’m not feeling confident this treatment is working that well and even with a reduced PSA I’m feeling a bit deflated and tearful. 

This disease certainly takes you on a rollercoaster of emotions . 

Take care 

Phil