2 years into Stage 4 Treatment

[petdoc]

Hello all,

I’m writing for some help regarding my dad.

2 years ago he was diagnosed prostate adenocarcinoma Gleason 5+4 with PSA 146 and Mets to ischium, sacrum and one rib. He started on Zytiga, Lupron and Prednisone and received 20 treatments of radiation to a cumulative dose of 60 Gy. Overall he has tolerated the treatments well and is feeling good and his PSA has remained undetectable.

He has a doctor appointment with the oncologist this week and my father told me they are planning on discontinuing ADT and will monitor his PSA every 3 months. I recall when I was reading about everything 2 years ago when he was first diagnosed that if a patient responded well they would stay on ADT but perhaps I’m not recalling correctly.

Can someone point me in the right direction of the most recent and updated studies showing how to best proceed? I like his oncologist and he is very open to questions. I just want to be prepared and ensure my dad is getting the best treatment possible.

Thank you so much.

Arielle

[Djangler]

This one's a few years old, but it gives you an introduction to the treatment.nature.com/articles/s41585-...

Basically, it's a quality of life vs. risk decision. Hopefully his doctor is on board with this decision.

[petdoc in reply to Djangler]

thank you for the reply and including the article. Apologies that I wasn’t clear, his team of doctors intends on taking him off the ADT now that it’s been 2 years. My dad is just following along with their recommendations but I want to make sure that is in fact the best decision.

[Tall_Allen]

If he is not tolerating ADT well, he may want a break. But he is not cured, and no one can guarantee that a break will not lower his survival. It's up to him.

[petdoc in reply to Tall_Allen]

Thank you. I’m sorry I wasn’t clear, his doctors are indicating that he will stop therapy. He is happy to follow the doctors recommendations. I’m hoping to find studies to help me have a solid discussion with the doctors regarding this decision. I was under the impression that ADT should continue long term until/if castration resistance develops?

[Tall_Allen in reply to petdoc]

You were clear. I'm saying that it is up to him, not his doctors. He is not cured, so there is risk involved.

[petdoc in reply to Tall_Allen]

thank you.

[JWPMP]

My husband has stage IV, Gleason 9, Oligometastatic prostate cancer. For a variety of reasons, he only had limited radiation therapy. He is on Lupron, Abiraterone, & Prednisone. The original plan was two years. Since he is tolerating the SE's so well, his RO & MO both (he is being treated at UCSF) advised against a "vacation" and he is six months into his 3rd year. He remains undetectable. As much as he would love a break, he and his doctors feel that "rocking the boat" would be ill advised. They did leave the decision up to him. He doesn't want to risk a premature recurrence. Tall Allen is a rock solid source of accurate information. Pay close attention there.Best to you and your Dad.

[petdoc in reply to JWPMP]

thank you for your reply!

[JWPMP in reply to petdoc]

And do let me reiterate...limited RT up till now and very little RT possible in the future played heavily in this decision.

[Concerned-wife]

when my husband was diagnosed in Aug 2920, we believed he’d be on lifelong ADT but he is on a break. Two centers of excellence suggested this. If you go to UroToday, you can read the specialists’ discussions about this. The only study about intermittent , I think, is older ncbi.nlm.nih.gov/pmc/articl... but this was with just ADT not with one of the additional drugs like Abi. The thinking now seems to be to try intermittent if the man achieved a deep remission, and catch any recurrence early with a PSMA scan and close PSA monitoring.

[petdoc]

thank you for your reply ♥️

[Runner4000]

I'm stage four and first had my cancer identified more than 20 years ago. I have taken a couple of breaks in the past after PSA remained undetectable . Felt good to be free of the Lupron I was taking. When PSA started going up, I got back on the Lupron. But the comments here are valid. The tiny cells never completely go away, and there is a possible chance they are more likely to return with no ADT. So, it's a personal judgement-call. That's probably why Tall Allen indicates that a break may be called for if one is not tolerating ADT well. My PSA for the past several years has now hovered around 2.5, and it is recommended that I take no vacation--too risky.

[dadsdrdawn]

Blessings and optimism to you all first.

Next, the only reason my dad was taken off of the ADT, was that his cancer had advanced to his bones. His doctors wanted to do something more aggressive. And, his PSA was steadily rising. After 3 different teams talked to my dad...they agreed to take him off.

Next, He did not respond to the Lu-177 after 4 months, and now he is on Zytiga and Prednisone.

This week he did 5 doses of radiation to his spine where the largest tumor is, causing him pain in his sacrum. He has a "few other spots" on his hip and neck that they are watching.

He is a powerhouse of a man, although only 5'5 and 123 pounds...his mind is constantly going, and is VERY sharp. He will be 88 on July 7th, and has a trip planned next week to Falling Water the Frank Lloyd Wright home, with my mother.

Not sure if this helps, but my dad's will to live is what is keeping him alive...and his zest for life!

I pray you all keep yours optimistic, and that all of your thoughts do not ONLY revolve around being sick.

with love

Dawn

[Cactus297 in reply to dadsdrdawn]

What a wonderful attitude!

[bandgeek]

Sounds like good news to me. Everyone is different. As others have said...he is not cured, and never will be. He will be monitored I assume....1st monthly then 3 month blood work... worse case, if his PSA does start to rise they can order scans and depending on outcome, put him back in treatment. Unfortuantely, the progression of my disease means I'll be on ADT the rest of my life. Good luck to you both.