Advice needed from the “club” we’re all in.

[Dondodoc]

Diagnosed December 2017 after having been treated by GP incorrectly for BPH since 2014 with Finasteride! Diagnosis metastatic carcinoma prostate T3 a/b NO on MR metastatic disease on bone scan and CT. PSA 11.2 Gleason 9 on biopsy all cores. 2 metastasis L5 and right Iliac crest.

Treated ADT prostap (Luep)and Abiraterone with pred for 2+ years stopped due to heart problems. Went on to enzalutemide for few weeks until stopped due to severe side effects.

20 th November 2020 PSA < 0.1 testosterone 0.09. 4 x 4weekly blood tests since then to 7th May. Show same results <0,1 and 0.09.

Clinical Oncologist (well respected Consultant FRCSurgeons and FRC Radiologists) now suggests going back on enzalutemide at perhaps half dose.

My thoughts are stay on just prostap until figures start to rise or go with his suggestion? (If there is a way back)

Bloods generally within range Alk Phos 86, Alt 15, EGFR 82, Creatinine 82.

Age 77, no special diet, little exercise. Enjoy large vodkas nightly living life perhaps to full.

Welcome comments or thoughts from the club.

[Magnus1964]

If what you are doing now is working, stay with it. Although I am not to sure about the vodka.

[Dondodoc in reply to Magnus1964]

Thanks Magnus, I had assumed it was the vodka which was helping!

[Shooter1 in reply to Dondodoc]

Agree. I'm on Xtandi half dose these last 3 1/2 years and now starting to fail. With your low PSA I wouldn't change a thing until you get a rise to at least 0.2, but that's just me. Keep life worth living. Life is good, especially when lived to the fullest!!

[Dondodoc in reply to Shooter1]

Thanks Shooter, life is better than it was on abi and Xtandi

[Hidden in reply to Dondodoc]

I could well be.😂

[Tall_Allen]

"My thoughts are stay on just prostap until figures start to rise or go with his suggestion? "

Enzalutamide will keep you alive longer and delay progression. If you wait to use it it will be much less effective. There is a clinical trial combining enzalutamide, Ra223, and Zometa that may be ideal for you. Another strategy is to use docetaxel now while it can have a bigger effect.

[Dondodoc in reply to Tall_Allen]

Thanks T_A I really appreciate your reply. I will email consultant and suggest that route. Don

[Hidden]

One card carrying member to another. I salute you in your effort to spike the beast !! Taking time to smell any random roses 🌹 along the path.

[Boywonder56]

Keep on keepin on....till psa goes up ....qol matters

[Boywonder56]

but listen to ta .. imo

[tsim]

I'm trying to do some research on early diagnosis trails especially with BPH and prostatitis, could I ask you what your history was from 2014 to 2017 regarding symptoms and PSA. Did you have any imaging or diagnostic tests of any kind done?. Were you on finasteride the entire time?

[MateoBeach]

You are oligometastatic, meaning just a few sites. Have you discussed with a RO doing targeted SBRT to the two mets? (Metastasis directed therapy)The RT would be accompanied by further combined ADT as TA suggested.

R223 is another consideration as it works better earlier than later.

Also consider requesting Provenge treatment now rather than later.

Request a bone strengthening / protecting agent such as denisumab or zolendronate.

You want everything on your side for the long run ahead. Paul

[j-o-h-n]

Use a reusable straw when sipping Vodka.........Nostrovia.....

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 05/17/2021 10:12 PM DST