The million dollar question

User

Posted 01 Jun 2023 at 23:08

Hi Phil I am sorry to read that your PSA is still going up the way. I can see what your Onco has started speaking to you about chemo now as with a quick doubling rate it can be on you before you know it. I know you wanted Enza to keep things in check for a lot longer and as you know I feel your pain! Of course it could be something else that is causing the rise and I am praying that your PSA comes down again. Sorry I have no clue regards stents, but i am sure someone will have knowledge.

I think the holiday is a difficult decision for you right now. I guess you can only discuss with family and friends and see how they all feel about it too. Would your stents or any reaction be covered by the insurance?

As I say, fingers crossed PSA will fall again mate. Sending positivity your way.

Michael

User

Posted 02 Jun 2023 at 22:38

Hi gaz,thanks for response the pendulum is swinging towards going and stuff it,but I need to see how the procedure goes Wednesday and how I feel.

Michael,what can I say I hope you are starring to respond to your chemo,after speaking to my specialist nurse today who is brilliant and we talked for 50 mins over the phone about my test results which my oncologist wouldn't give me the time of day, I've found out that there is no lymph node involvement,I had 1 spot in my skull and 2 on my ribs,12 months ago I had 20+ spots on shoulders back and lungs so positive news there,the lid is still shut but the buggers trying to get out the box.

Stay strong Michael regards Phil 🙏

User

Posted 02 Jun 2023 at 23:11

Hi Phil Glad to hear there are many positives for you mate. Sounds like the battle is still being won in your body. Keep it up pal. I had to stop chemo unfortunately as it wasn’t effective.

I will see what comes next.

Take care pal

Michael

User

Posted 03 Jun 2023 at 12:55

So sorry to hear the chemo has stopped,what's the plan forward for you?can they do a bit of twicking with the chemo and you can restart?How's you QOL at mo?are you sleeping eating OK and managing to get out an about?

Regards Phil

User

Posted 03 Jun 2023 at 13:53

Hi Phil, thanks for asking and I don’t want to take over your thread so a quick update. PSA pushing way up. I am hoping for Radium 223 but waiting on a scan result. Otherwise it will be end of road and just management. QoL is ok just now though I had a Haemoglobin crash and needed a transfusion last week. My appetite is back now and I am eating again. The transfusion also helped my energy. I am still mobile, retired from work and still walking. Had to give up running unfortunately due to precarious bones! So I am ok Phil, just had an awful aggressive type of this silly disease. Crossing fingers for you pal and I do hope you get away on holiday ok.

Cheers Michael

Edited by member 03 Jun 2023 at 13:54 | Reason: Spelling

User

Posted 07 Jun 2023 at 20:06

Evening all

Just had nephrostomy tube removed and kidney stent fitted until removal of stones,wow what an experience that was felt like he pushing the pipe in my kidney and out of my penis,just had my first couple of wees and what an experience that is as well,the nurse on the ward explained it as a tooth brush being pushed down your urethra and I certainly agree with her there,hopefully the sensations will pass over time.

Take care all regards Phil

User

Posted 07 Jun 2023 at 20:08

Goodness Phil, that sounds like quite the experience!!! I hope you are ok. Hope things settle down for you soon and you can make a decision about travel.

Best wishes

Michael

User

Posted 23 Jun 2023 at 08:28

Good luck with everything Phil and MGF - KEEP FIGHTING LADS!

User

Posted 23 Jun 2023 at 13:38

That sounds horrible Phil

Keep fighting

User

Posted 23 Jun 2023 at 15:51

Thanks guys

I'm going under in the morning to have stones removed god knows what I'll wake upto but what will be will be,I'm convinced that my rise in psa is all the interventions I've had over the last few months as in uti,nephrostomy bag fitted and removed,kidney stent fitted and tomorrow's op,my oncologist begs to differ but I'll take her comments with a pinch of salt,all she talks is chemo chemo chemo and I'm not giving up on enza just yet with a rise of 0.9 to 2.4 in nearly 3 months when all this stones business all began.

Regards Phil

User

Posted 23 Jun 2023 at 22:37

Phil 1969,

Best wishes for the surgery.

JedSee.

User

Posted 03 Jul 2023 at 20:36

Hi all

Thanks for your replies,latest update on todays oncology appointment which was 1 hour late she was on the phone 9m8sec and virtually put the phone down on me,PSA has not surprisingly gone up again to 3.23 that's a rise 3 months in a row but that co-insides with diagnosed with stones nephrostomy tube fitted and removed,kidney stent fitted removed and re-fitted,stones removed and cafitier fitted and removed,antibiotics painkillers and other meds,oh and a bout of covid in-between all I hope attributing to the the rise,my oncologist is willing to give me a few more months for stent to be removed on Friday then I can put the whole kidney stone fiasco behind me and monitor for now,great ain't it living your life month by month.

Take care all regards phil

User

Posted 03 Jul 2023 at 20:49

I hope things improve after all that you have gone through recently Phil always follow your progress and look forward to seeing you improve after the stent is sorted all the best gaz 👍

User

Posted 03 Jul 2023 at 21:07

You’re a rock Phil. Keep on soldiering. All sounds horrible what you have been through to be honest. But I get the living month by month. It’s bad enough for me 4monthly. My Onco isn’t even bothering to make appointments now. Just a waiting game. But I try to keep happy and busy.

User

Posted 03 Jul 2023 at 21:25

same to you Chris I follow your progress and think you are a great inspiration like Phil hoping you are doing ok I know it's tough but you both give all off us strength to move forward all the best gaz 👍

User

Posted 03 Jul 2023 at 21:31

Hi Phil 1969,

So sorry to hear of all that you have gone through (and are still going through). It sounds like hell.

I hope they can resolve your health issues quickly, and as you say, then maybe you'll get a clearer picture of whether the rise in PSA is related to these other medical conditions or is actually related to a real progression in PCa. Obviously, we hope it's the former.

I'm sure that many of us on this site are thinking of you and rooting for you.

Take good care of yourself.

JedSee.

User

Posted 04 Jul 2023 at 18:15

Hi Phil

Just read through your thread. I'm a bit shocked at how unhelpful your onco has been. I went through 7 different oncos at Weston Park and whilst one or two seemed to be in a rush, the others always found the time to talk and answer questions or alay fears. It's an important part of what they do and it's certainly made a big difference to my journey through cancer. Do you have specialist nurses at the hospital who are available to you? - I found them almost as knowledgeable as the oncos, and much easier to contact.

As for the kidney stones - back in the old days they used to present them to you later and you could keep them as some sort of weird souvenir. But the pain and suffering I am told is unbelievable - you have to experience it yourself to have any idea what it's like. A friend had the procedure where they stick the endoscope in the very last place a guy would wish it. Various guys who'd been through the procedure assured him it wasn't anything like as painful as he feared.

The day after he came back to work in a state of shock. The pain had been extreme to say the least, "if there'd been a gun around I'd have shot myself" he commented. Fortunately he didn't.

You deserve a medal for bravery after going through all that, and a much kinder oncologist. I hope your kidney problems clear up without further issue.

DeanA

User

Posted 04 Jul 2023 at 23:15

Hi Dean

Thanks for getting in touch,hopefully this time next week the stones will be behind me with the stent being removed from yes you guessed it down below!

Your right the specialist nurse I speak to and meet up with at a group every 3rd week of the month is great all the questions I need to ask she knows and has helped me a lot in getting in touch with the right people and chasing up appointments.

All the best Dean,stay strong 💪

User

Posted 07 Jul 2023 at 16:58

Hi all

Quick update...had flexible cystoscopy to remove kidney stent today,passed that little bugger of a prostrate on way past getting it so I stuck me thumb upto it on the screen and said thanks for nothing,not the best experience I've had having the stent taken out but not as bad as I thought it was going to be,well no excuses now if psa keeps rising next onco appointment in October.

Take care all

User

Posted 07 Jul 2023 at 21:12

Good luck Phil hoping everything stays positive you deserve all the luck going gaz 👍

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