Zytiga failure after 4 years what now

[Db999]

Hi Diagnosed in 2016 had SBRT . Life good 2 years and found 1 met in lung . Did Lupron/zytiga PSA drop to under .1 for 2 years. Requested a vacation . 15 months later PSA rises do PSMA . One met on vertibrae only . Did SBRT and doc said let’s do lung met at the same time even though it’s not showing . No results, PSA rises to 3.5 . Keep in mind T was also 260 then . Back on Adt and Zytiga . PSA went down, but now has risen from .36 to .56 to 1.15 . Zytiga has failed . Doc says no chemo for now . Just not enough cancer and I’m doing way too well for it . . I know SOC is Xtandi but she says it’s short lived if works at all . Looking for a clinical trial . I feel I’m in a bad place right now . Pleas shed some light

[Tall_Allen]

How quickly did your PSA rise from ".36 to .56 to 1.15?"

[Db999 in reply to Tall_Allen]

About 3 months

[Tall_Allen in reply to Db999]

Chemo should be beneficial

[Db999 in reply to Tall_Allen]

just left my doc at Siteman Amd she said we are not doing chemo .. to low of a disease burden she said . We are doing standard scans (BONE /CT ) to see if I have any visible lesions .. Also said until PSA is 2.0 I won’t qualify for one of three trails she’s found for me . I know you know your stuff, that’s what we just talked about . Scans 1/13.

[Tall_Allen in reply to Db999]

Your doubling time is rapid enough that your cancer is actively growing.

[Db999 in reply to Tall_Allen]

I agree with that .. she says it’s over treatment at this time .. we r gonna see what my scans show next month and go from there .

[EdBacon]

How fast is your PSA going up? Have you had any imaging done recently?

[gsun]

Sorry to hear about the rise in PSA. Do you think it had to do with the ADT vacation?I'm considering a vacation after 4.5 years.

[Db999 in reply to gsun]

I think it was a bad idea .. don’t do it

[jbskiatook]

Almost doubling of PSA in 3 months is not a good sign. I do not know what having had radiation within a year of starting extandi which is a chemo drug would mean. I personally would go get a second opinion. When my Lupron stopped working after 10 years I immediately went to extandi and I have PSA and testosterone of not measurable. It has taken me all most 2 years to control side effects. Once again I would get a second opinion on that because of the radiation question.

[Carlosbach]

Thanks for sharing your experience with us. I hope you get a second opinion. To get one I had to go outside my HMO, but I felt better afterwards - and the 2nd MO's opinion helped move my primary MO off the stick. (I was surprised when Medicare picked up the tab)

I'm a little over 2 years in on Lupron/Zytiga and have been fantasizing about a vacation or BAT. The cumulative side effects of Lupron are wearing, but overall my QOL is still decent for my age (and after the general abuse of my body for decades). After reading your post and your response to gsun, I will take some time reconsider.

Hope your spirit lifts and you are able to enjoy the Holidays. It is trite, but true, the present is all we have, so attend to and soak up the many small delights our world offers us every day. This morning I am sitting by our Christmas tree, listening to music, drinking coffee (along with nibbling on a sugar cookie tree that my wife slipped onto my plate), and checking in with my APC cohort. Today is going to be okay...

[EchoII]

I cannot advise you. I am still on my ADT vacation with psa <O.1. Soon it will change I am sure but not yet.

[bandgeek]

That's a roller coaster. I came to PC already Stage 4 with multiple bone mets....too many to count. I was told I would probably be on ADT the rest of my life. I was on Lupron and abiraterone nine months...when I plateaued at 1.5. Stayed there then rose to 2.9 6 months later. Traded out abiraterone for Nubeqa. Briefly down , but back to 2.8 in 6 more months.

So I am now considered castrate resistant. I've been incredibly lucky to not suffer the typical side effects of Lupron. Just scheduled a PSMA. Will have a biopsy depending on if there is growth.. Then maybe chemo. BUT, if no significant new cancer ( low disease burden), they will just keep me on ADT and monitor my PSA rise. My medical oncologist explained it as.... ADT hasnt failed. It continues to suppress the majority of the cancer. So far, the resistant cancer is fairly small and PSA creeping up incrementally. My oncologist is part of a clinical trial, but I'm not eligible till (when) I do chemo.

[slpdvmmd]

Concur with chemo. This attitude of wait and see needs to go away. This is really the point Eugene Kwon at Mayo tries to stress in his YouTube videos and face to face.