Anyone been able to get off meds with metastatic prostate cancer?

@sandguy
God doesn't give cancer. We live in a fallen sinful world...that's where all the bad comes from.

Stage 4, Gleason 9. Radiation and ADT. Doc said, "ADT rest of your life ... or for as long as they work." With his OK, I stopped ADT after 2+1/2 years last July. First lab draw coming up md-October. Fingers crossed. At 77 y/o, I'm not opposed to taking ADT for the duration ... just not a fan of the side effects. Best of luck!

You ask..."Has anyone ever bern able to get off nubeqa or any other treatment medications for metastatic cancer..."

Yes, see attached clinical history.

There are different schools of thought about continuous vs intermittent treatment. There is no consensus. There is discussion about delaying castrate resistance, how long the holidays are, if, how fast and how much T recovers which can be a function of baseline T, age, which ADT agent, how long you were on ADT, OS...

I had one urologist who said he would put me on continuous ADT monotherapy after surgery and SRT failed. I looked at him, said you haven't listened to a darn thing I've said. I left, went to Mayo, saw Dr. Kwon who supported triplet therapy for a defined period and criteria for coming off treatment.

My medical team here in Kansas City are active listeners, support shared decision making and know that continuous treatment is a choice of last resort when deciding on treatment.

There is some data I've seen from recent clinical trials that suggests those of us who experience an undetectable PSA in the first 3-6 months of treatment are good candidates to come off treatment and actively monitor, see the EMBARK trial.

My break from treatment after triplet therapy was just under five years. After doublet therapy we are at 16 months, next labs are in Jan. I am "happy" and a realist, I am not expecting a cure but if I have 3-5 years of PFS, that works!

Given the pace of change brought about my medical research, I know will have new choices when the time comes.

Kevin

I agree totally my pcp at urologist pretty much said there's nothing I can do and offered no other options I self referred myself to and oncologist thanks to jeffmarc who encouraged me 2. Now I'm on triple therapy and my.second pet scan was a lot better. I.dont understood why the urologist wouldn't offer another option. I just thank God for using jeffmarc and others on here I'm so blessed

Pray for u . Thanks for your response

Has anyone had the shaking or seizures with Nuqeba?

@jeanadair123
I know dozens of people on Nubeqa, I have never heard anybody report that as a problem.

I know a couple of people had to cut back to one pill twice a day instead of two.

I think it was reported once that some person on here had been off his nubeqa for almost a year but really that done mean much i wouldn't think cause that's not that long.

@jeffmarc
Has anyone refused ADT, and what was the outcome?

@jeffmarc Those side effects are listed as rare side effects.