IS THIS A PATTERN???? Thoughts and helpful ideas to guide a path

[Mrtroxely]

Diagnosed Gleason 9 advanced, PSA 19, mets in pelvis(maybe more???)Had 6 x chemo ,5 X radio to prostate, ADT through out.PSA was down to 0.08 at one point.1 MARCH23 0.29

25 MAY23 0.08

NOV23 0.12

05 DEC23 0.25

12 FEB24 0.44

started feeling bouts of unreasonable tiredness, think maybe active cancer???

I'm active, do gym, not over do gym.

these PSA are below 1 but there looks like pattern.

Oncologist is due for a phone consultation on friday.

(the call usually ends up being a nurse instead of the oncologist and generally asking how I'm feeling and isn't it good PSA is below 1.....

I've had 1 MRI to pelvis at diagnosis

a bone density scan just after diagnosis.

No genome testing, no pmsa pet scan,

Treatment from NHS seems to just be via PSA results?

They have said they would not be concerned until PSA reached 2

I do not know what my testosterone levels are????

any thoughts, questions and guidance would be appreciated

[MoonRocket]

Hmmm, I thought I replied earlier to this post....try adding Abiraterone (zytiga) with Prednisone. Mono-adt is probably not appropriate for you

[Mrtroxely in reply to MoonRocket]

How is the side effects on them both for you? What age are you?Prednisone steroids I've taken before make me wired?

The 2nd line adt stopped me sleeping and made my mood swings extremely low(enzalutamide goes round moping up other testosterone, but also other necessary hormones for sleep and mood...)

[Bissbogs in reply to Mrtroxely]

This is exactly how the NHS deal with stage 4 prostate cancer. They just monitor your progress via PSA result which is relayed too you by the Oncology Nurse. Nothing else, no consultant appointment, no trials that is it. Just soothing words. I have not seen anyone in the past four years. Following this forum is the very best thing that you can do. Research supplements, repurposed medicaments that you can buy on the internet. Hobson's choice I'm afraid. Fight your corner. Good luck Martin

[Mrtroxely in reply to Bissbogs]

No an easy fight though....How can anyone know what the problem is without clear testing???

No gene tests

No pmsa pet scan.

Only test that shown anything was an MRI to pelvis, which shows prostate and mets to pelvice.

But 2 numb fingers occasionally make me think spine or ribs mets???! Who knows!!!

But seems like PSA is on the up!!!

What would and will you do???

[MoonRocket in reply to Mrtroxely]

I was fine when I was on Abiraterone with Prednisone. The Prednisone is given because Abiraterone blocks the natural production so it's serves as a replacement for what is not produced. I'm on mono enzalutimide now and I am having trouble sleeping but it's not terrible.

The only thing that you need to do is monitor the liver enzymes when on Abiraterone. Some men get elevated ALT and AST. Usually adjusting the dose is all that is needed.

[j-o-h-n in reply to MoonRocket]

Trouble sleeping? Me too........I guess we're birds of a feather.........

Good Luck, Good Health and Good Humor.

j-o-h-n

[Mrtroxely in reply to MoonRocket]

Sound advice and experienceThank you

[Grandpa4 in reply to Mrtroxely]

I did both and the data clearly say it prolongs life over ADT alone. Also side effects are not much worse. They both have anti testosterone effects. Abiraterone can cause a liver issue early that often goes away with time or lowering the dose. It can cause hypertension but that is manageable. The prednisone dose is 5mg a day so just barely above maintenence so it does not usually cause lots of side effects.

[Islandboy2021]

If your PSA is going up will on ADT, this means you are becoming castrate resistant. You will need a second hormonal drug. I didn't last long on Abiraterone and it messed up my blood pressure but it does work well for some men. Did you try Enzalutamide already? This should work as well. Don't wait you need to get onto the next treatment as soon as possible.

[SteveTheJ]

"started feeling bouts of unreasonable tiredness, think maybe active cancer???"

In my experience, pain makes me tired and ADT can (but doesn't always) make me tired. It's hard to believe cancer would make you tired but don't rule it out unless it's causing significant pain.

[Mrtroxely in reply to SteveTheJ]

Thank you, That sounds reasonable

[Bissbogs]

Insist on Enzalutamide. The NHS do prescribe this medication and during Covid became standard of care (SOC) to keep people from mixing in the chemo ward. Good luck on Friday. Martin