BILLY NEEDS HELP

[billyboy3]

OK troops, after 26 years of surviving post prostectomy, with a Gleason 4/3, 4/4, some 41 rounds of intermittent hormone therapy using lupron, casadex, advodart, I had a break thru last November as my psa went back up mid on cycle. After having my radiation oncologist ignore the realities of this, I have now wasted 5 months, until I got scans done. The Pet 18 scan showed cancer has spread, including left shoulder, pelvic etc. to the extent where the radiation oncologist says there is no point as to many areas, so wanted me back on lupron etc. until I can get three or four months of low testosterone to match the increase in psa. I failed to get monthly testosterone nor was told to do this in her letter in December.

my psa was 11.7 last week, the highest in my life. I have been off all drugs for two months now.

I think I should start a combination of two drugs immediately and Not go backwards on Lupron again. The pet 18 is JUST STARTING HERE IN EDMONTON CANADA AS A DRUG TRIAL-we are far far behind you US guys!!!!

So, what do you guys suggest I do? I am waiting on the head of medical oncology to see me to waiver the two to four month wait on the testosterone given the failure of my lupron, so see no purpose except to give my cancer more time to grow and hit even more sites.

Thanks for your help as I head into the final ozone!!!! you can also text me 587 778 4808 or my email [e-mail]

[Tall_Allen]

Of course you have to go back on Lupron, but the question is what to add to it? Can you get abiraterone or enzalutamide?

[God_Loves_Me in reply to Tall_Allen]

If you are in waiting and watch zone than go for clinical trials as well

[billyboy3 in reply to Tall_Allen]

yes, thanks the idiots here want to wait and see what happens after my testosteone drops down, so I am trying, now begging to start air or enz, which is the best course and you think I should go back on lupron, casadex, and advodart combo?

A hard question but please I need some guideline to have, Tall, how much time can this buy me at this stage?? I need to plan and get rid of my little empire so want to know, even a guess, would help me, please. and thanks.

I have been doing volunteer work for over two years since the Ukraine war started and have been going 24/7 12 to 16 hours a day to help these poor refugees, I have fixed up over 783 resumes and helped them get jobs, they are the most educated people that have come to Canada and some into the USA since our countries came to be. Over 75% of the people I have helped have at least one degree!!! Thus are productive and want to help our countries and become part of us!!

[Tall_Allen in reply to billyboy3]

I only have at hand the two trials of adding enzalutamide or apalutamide (EMBARK or PRESTO) for men progressing after RP. I think they apply to you because your progression was only discovered due to PSA progression and neither trial used PSMA PET scans to find metastases. Neither has mature survival data, only biochemical-free survival:

prostatecancer.news/2022/09...

prostatecancer.news/2023/05...

Casodex and Avodart are useless after those.

Bless you for the work you do with Ukrainian refugees! I hope our ineffectual House of Representatives gives them (and Israel) what they need to get rid of the threat for once and for all.

[Mcrpca in reply to billyboy3]

That’s amazing! Good for you.

[billyboy3 in reply to Tall_Allen]

I sent you a further question but it never got thru as I had photos attached, so will try again now, if not, please send me your email or text me. thanks.

colour

[Tall_Allen in reply to billyboy3]

I can't read that. Just send me a PM.

[j-o-h-n]

You have me beat.......... you, fighting the beast for 26 years and me 22 years.... FYI My doc took me off of Casodex and replaced it with Nubeqa (in April 2023), but I'm still on Lupron. Looks like the Nubeqa is working. BTW You're age is? I'm 87.

Good Luck, Good Health and Good Humor.

j-o-h-n

[billyboy3]

72, yeh we have beat the odds big time, but my latest shitshow with the oncologists has turned into a nightmare for me. Sadly, they say nothing about my long time survival other than it is impossible ha ha!!! they are too lazy to even spend time to figure it out, so very sad to have fought this long and cannot even get my body used to help others, oh well, I am a giant pain the ass for them now, as they look very bad for ignoring me and not using my drug regime solely due to cost, but at least, they owed it to tell patients if you have $$ go to the US or Mexico and get them, anyway, stay well, we should celebrate at some point, where do you live .I am in Edmonton, Canada but have a place in Arkansas so am heading that way for a break, as am exhausted from 80 to 90 hours per week helping urkainian refugees for the past 27 months-another insane situation killing and destroying so many live. stay well Johnny!!

bill