should I stop Zytiga early?

[PaulJR]

hello,

i’m new here and encouraged by all the experience and caring nature of the conversations.

Would love if anyone has wisdom around a decision to stop Zytiga early?

I am 56 and was diagnosed 2/21 with Gleason 9 no lymph nodes invasion, but some vesicle invasion and perhaps a little outside margins was hard to tell. Had prostatectomy, radiation, and been on Lupron for 21 months and Zytiga for 17 months. PSA undetectable and five tests of Natera’s blood test show 0.0 parts per million of my cancer cells. Am a vegan and very active but have typical symptoms - hot flashes etc.

I do want to get my testosterone back and be healthier, stronger, less fatigued etc. heard and read different things about Zytiga reducing testosterone when not on Lupron. Plus it seems I’m doing well so wondering if I can get off it a little early.

Very much appreciate any advice.

Paul

[Mike1971]

ZYTIGA works by interrupting the androgen-making process (stopping testosterone).

It seems your treatment is going great - you sure you want to stop early and add the risk? It will probably take a few months for testosterone to come back anyway.

I myself quit ADT early for QoL and other reasons I won’t go into here.

- Is it nice to rid the zytiga side effects? Yes.

- Is it nice to get testosterone back? Yes.

- Is it sometimes scary, making you wonder if it was perhaps a mistake to stop early? Yes.

[PaulJR in reply to Mike1971]

That's exactly how I feel all around. I was going to stay on it unless someone here pushed me over the edge, but given my great results I'm itching to get my testosterone back.

[Mike1971 in reply to PaulJR]

PaulJR,

I actually agree with the advice of Tinuriel below.

[Tinuriel]

My husband's experience was identical to yours - in 2014 Gleason 9 no lymph nodes invasion, but some vesicle invasion and perhaps a little outside margins. RP, radiation, Lupron - but PSA began to rise and he is now mCRPC. It sounds like you have a shot at a cure, so I would think you might want to go the distance and not risk it. I wish that for you.

[PSAed in reply to Tinuriel]

Wise advice.

[PaulJR in reply to Tinuriel]

Sigh. Well I'm very sorry for your husband's recurrence, I'll share that. And appreciate your kind wishes. Learning towards continuing it....

[Magnus1964]

If zytiga is still working, why stop. Loss of testosterone is part of living with prostate cancer.

[PaulJR in reply to Magnus1964]

I guess so. But I wanted to stop to get my testosterone back on premise that I licked it. Perhaps naive.

[TuffNuttoCrack]

Due to hot flashes they’ve offered me to reduce zytiga from 1000 to 750. If it’s working keep going, no one knows how you’ll do without it, with each cancer and each person so different.

[PaulJR in reply to TuffNuttoCrack]

Forgot to mention I cut it in half already!

[TuffNuttoCrack in reply to PaulJR]

I think it depends upon how much cancer you have left. Good luck on what you decide and keep us posted on PSA and T

[oneflpdwn in reply to PaulJR]

I cut mine in half two months into a 24 month course of Orgovyx plus Zytiga because I was so dizzy and lightheaded there was no way I could tolerate the 1000mg. Now I am at 17 months and the 500mg is messing with me. Cognitive issues and blood pressure spikes. Haven't stopped yet but have a meeting on friday with a panel of Oncologists and I'm going to make my case to stop now. Quality of life no matter how long that life might be is underated by many oncologists. Being alive and severely diminished by a treatment is not my idea of a life.

[ChristopherM123 in reply to TuffNuttoCrack]

Try Clonidine for the hot flashes. I used to get them a lot and they were really discomforting. No longer, I am happy to say.

[TuffNuttoCrack in reply to ChristopherM123]

Thanks Chris, I’ll look into it!

[David20451]

In my case I stopped Lupron and continued with Zytiga, later Xtandi as a mono therapy. T not quite castrate around 250, But I feel good and PSA is undetectable.

[JWPMP in reply to David20451]

If you don't mind, where are you being treated? You're the second person I've heard stopped Lupron and stayed on Zytiga alone with good results. I asked my husband's MO at UCSF about doing that due to Lupron side effects. They said it's been discussed, but there's nothing to back up taking that route. Thank you

[Hidden in reply to JWPMP]

250 Testosterone is NOT good results.

250 or 500 it doesnt matter.

<50 is acceptable.

[David20451 in reply to Hidden]

PSA is still undetectable even at non-castrate levels.

[Hidden in reply to David20451]

You have no bio.

How do you know any previous treatment worked, like if you had radiation, and you are taking XTandi for nothing??

[David20451 in reply to Hidden]

I do have a bio.

[Hidden in reply to David20451]

Now you do!!!

[David20451 in reply to Hidden]

It's always been on there. I just updated. Please stop being so argumentative. We are all here for the same purpose. To help one another.

[David20451 in reply to JWPMP]

In Phoenix at Virginia Piper Honor Health. Had SBRT twice one year apart on a stubborn lymph node on the iliac chain. Soon after had Provenge treatments. Upon completion I started on Xtandi and dropped Lupron at my request. PSA has been undetectable for 9 years. I was first diagnosed in 2000.

[JWPMP in reply to David20451]

Thank you

[Hidden in reply to David20451]

I would do XTandi without Lupron. Zytiga without Lupron is useless.

[JWPMP in reply to Hidden]

Good to know

[PaulJR]

That's the encouragement I was looking for. I'm very happy for you! May I ask why you switched to Xtandi? And how long it took you to get to 250? (age too if you wouldn't mind?). Those would be big helps! Best...

[David20451 in reply to PaulJR]

About a year.

[j-o-h-n]

Like my Dad said to me when I was a kid and he caught me in my room looking at playboy magazine................."Johnny boy, If it's working.......keep on . . . . . . .

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 09/18/2023 5:12 PM DST

[agnut]

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