Three strikes and...

[Jvaughan0]

After prostate removal in 2014, prostate bed radiation in 2016, and whole pelvis radiation in 2021 plus Lupron, my PSA is .2. I'm still receiving Lupron injections and my PSA never dropped below .1 even after whole pelvis radiation based on a PSMA scan that targeted two avid spots. My MO has never been in favor of adding Zytiga as ADT+. I'm thinking he is going to wait for the PSA to go above .5 and when order another PSMA scan before starting Zytiga. I'm also thinking starting Zytiga now rather than later makes sense since the cancer is apparently no longer confined. Anyone have any thoughts about treatment in general?

[Tall_Allen]

They use apalutamide+ADT in this clinical trial of salvage radiation.

clinicaltrials.gov/ct2/show...

Discuss emulating that protocol with your oncologist.

[Jvaughan0 in reply to Tall_Allen]

My MO says it is too early for a second agent. He advised to see if there is an upward trend and then try to find it was a scan. Sounds as if he is thinking more spot radiation in the future. I don't agree with him, but he is the nationally recognized MO. I'm just the lowly cancer patient who is bound to eventually glow in the dark.

[StayingOptimistic in reply to Jvaughan0]

maybe be we have the same MO. Mine did the same thing a few days ago. He wants to wait until psa =>.2 and then do a psma scan. He said these drugs have a lot of side effects. He is a very well know doctor in a very big cancer center.

[Jvaughan0 in reply to StayingOptimistic]

I hope that is the case. Some doctors are more conservative than others. Granted my MO sees patients everyday. The only one I see is looking back at me in the mirror.

[StayingOptimistic in reply to Jvaughan0]

mine only sees patients once a week, I guess. The rest of the week is in lab trying to find a cure.

[dhccpa in reply to StayingOptimistic]

Or at least another incremental add-on therapy.

[Hidden in reply to Jvaughan0]

I like Ta’s advice to get on that trial . A trial worked for me .

[Schwah]

virtually every study has shown adding Zytega and the like earlier increases survival. It’s old school thinking to hold treatments in the bank for later.

Schwah

[Jvaughan0 in reply to Schwah]

The MO isn't old school. He is widely regarded and gets featured often on prostate cancer forums. He is just isn't saying what I think he should be saying.

[groth12345 in reply to Jvaughan0]

I got a 2nd opinion from MSK and they highly suggested to add Zytiga which I did at the 6 month point from being diagnosed. I've been on it now for about 18 months along with Lupron. Only side effects are increased weight, lower muscular tone and fatigue. It has kept my PSA undetectable for at least 10 months.

[Jvaughan0 in reply to groth12345]

Thanks for offering advice. I agree with you completely, but my MO has fought me on this for two years now. Radiation and Lupron was his plan no matter what I had to say. It has been 18 months since radiation and my 2 years of Lupron ends next October. My last PSA was up from .1 to .14 in April. Common sense would suggest I change doctors, but he is one of the most noted in his field. (I did my research and he appears often on Malecare forums.) Maybe he sees a bigger picture than I do. Google and online support groups don't make me an expert. Getting angry and challenging his care doesn't make things better. I will get another PSA test this month. If there is elevation, I will have one last discussion with him. No point in continuing a relationship with a doctor I don't trust no matter how knowledgeable he may be.

[groth12345 in reply to Jvaughan0]

I agree. Change doctors if you don't feel comfortable. Go for a 2nd opinion. MSK and MD Anderson have the the best doctors for this cancer treatment.

[Jvaughan0 in reply to groth12345]

I use to think Duke was one of the best.

[Gl448]

You need a new MO, or at least a second opinion. Especially if the one you’re seeing is more of a general cancer than genitourinary specialist.

[Jvaughan0]

He is prostate specific with a well known track record. I simply don't understand his reasoning.

[Hidden in reply to Jvaughan0]

It’s your life and good to question !

[Gl448]

Physical castration seems a bit extreme to me for someone who hasn’t been allowed to try any second line drugs.

[Jvaughan0 in reply to Gl448]

It's nuts, right? Couldn't resist...

[Gl448]

Glad you’re happy with it. I hope you tried other SOC second line treatments before PERMANENTLY castrating yourself.

Age might be a factor too…the older you are it’s probably an easier decision.

I would suggest that even if we’re already being chemically castrated with Lupron, that it is reversible. Snipping the boys off isn’t.

At 60, I wouldn’t even consider it for a second. At 80 maybe.

As you said, we’re all different.

[Hidden in reply to Gl448]

I did it at 53 ..I agree it’s a harder choice the younger one is .

[Gl448 in reply to Hidden]

Apparently not…

[addicted2cycling in reply to Gl448]

GI448 wrote --- " Glad you’re happy with it. I hope you tried other SOC second line treatments before PERMANENTLY castrating yourself... "

Reply was not directed to me; HOWEVER, on a Monday morning in April 2015 my Urologist advised ADT Drugs to which I told him "OFF WITH THE BOYS" as the FIRST treatment taken instead of SOC. 24 hours later they were GONE. Now EIGHT YEARS later I am 100% OK with having been castrated and looking forward to another midnight bicycle ride of 25+ miles in about 5 hours while wife and almost everyone else is sleeping here in SW FL. Just a 72.5yo Unique Eunuch living life to the fullest for what ever remaining time left on this planet.

[cancerfox in reply to addicted2cycling]

I could see some advantages for bicycling in being castrated. Is it more comfortable riding with no boys? Do you wear padded bicycling shorts? Just wondering, since I've been bicycling for many years. 🦊

[addicted2cycling in reply to cancerfox]

Different bike shorts pad thickness depending on bike. Going out after posting this on the RANS Velocity Squared Recumbent with minimal pad bike shorts and will even wear regular shorts if I take it to food store. Day 6 Semi-Recumbent just regular shorts and the multi density for Specialized Roubaix Expert, Giant Propel Advanced SL, Paramount Road Racing or Paramount Touring.

[Jvaughan0]

This post took a new direction. As I understand T levels, having an orchiectomy doesn't stop production of testosterone. There are other minor sources and, over time, the cancer cells adapt to find other types of fuel as well. It seems to me that the only benefit of an orchiectomy is not getting injections.

[addicted2cycling]

Off *T* until next blood testing in April. Good numbers will mean back on. Trying hard to up my bike ride mileage for each ride AND have a bug up my butt about entering the 2024 Walt Disney World Marathon Weekend Marathon.

[Hidden in reply to addicted2cycling]

please Sir? What Is your t level when you’re off t and on it ? Send a pic please from Disney! 👏👏👏👍

[addicted2cycling in reply to Hidden]

For months now undetectable, when starting back up it goes to 1,600ng/dL and down to 450/650ng/dL in 2 weeks when next injection takes place.

[Hidden in reply to addicted2cycling]

Mama Mia! Wow ..I’m dreaming of that t again ?

[addicted2cycling in reply to Hidden]

INTERESTING THING is that I have very little physical indication that it is high. Recovery is slightly quicker after a ride but no feelings of strength meaning the feeling's like 50 years ago.

[Hidden in reply to addicted2cycling]

Maybe not like 50 yrs ago but you’re much more active on that bike than our average no t bear .There aren’t many guys doing what you do ! Bravo!

[addicted2cycling in reply to Hidden]

Thanks, just hoping to continue kicking PCa in the ass the best I can.

[Hidden in reply to addicted2cycling]

Much better than it kicking our asses inside out for breakfast . It hides . Although We all know it will come back for its main course someday if we last that long ? 😳

[addicted2cycling]

I've read that Lance only lost 1.

[Hidden in reply to addicted2cycling]

correct . My back surgeon doc chua did it in Tucson for him .