PSA Drop After ADT Holiday: After an... - Advanced Prostate...

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PSA Drop After ADT Holiday

6357axbz profile image
30 Replies

After an 8 month holiday from Lupron/Abiraterone my PSA rose to 0.55 from a nadir at 0.01. After resuming ADT for a bit more than a month my PSA has dropped to 0.02. I didn’t expect such a sharp reduction. Is this to be expected, assuming I remained hormone sensitive?

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6357axbz profile image
6357axbz
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30 Replies
AlanMeyer profile image
AlanMeyer

My understanding is that, yes, it is not uncommon for PSA to drop back to the level it had before taking a break from ADT. I've known men who experience this for up to about three ADT breaks. It is most common in men like yourself who have very strong responses to ADT. Unfortunately, for most men, it eventually comes to an end.

Some early trials of intermittent ADT seemed to indicate that the duration of ADT response was equal to that of continuous ADT, but a later and larger trial indicated that it might not be. On average continuous ADT produced somewhat longer life span. See:

nejm.org/doi/full/10.1056/N...

Best of luck.

Alan

6357axbz profile image
6357axbz in reply to AlanMeyer

Thank-you Alan

Good news!

6357axbz profile image
6357axbz in reply to

Yeah, take it when I can get it

in reply to 6357axbz

Exactly. We will take what we can get . Go celebrate life!🥳

LearnAll profile image
LearnAll

axbg...what made you decide to break your ADT vacation at PSA 0.55 ?

6357axbz profile image
6357axbz in reply to LearnAll

The original plan per my RO was to go off ADT about 6 months after IMRT to prostate. Then to wait until my PSA increased to 2.0. Then, if I was still oligometastatic to zap my mets.

I got a new MO who is very proactive and she insisted that the MO, not the RO, called the shots and scrapped his plan and told me when my PSA increased to 0.50 to get a GA68 PET-PSMA scan at UCLA to get the best available definition of my metastices, then go back on ADT to beat down the mets as much as possible and then, if I am still oligometastatic, to zap those mets. Based on all I’ve learned here I was totally supportive of her plan. I didn’t want to wait until my PSA increased to 2.0 as I figured that was only allowing to cancer to progress further. During the time of my holiday my testosterone came back to normal levels so gave my system a infusion of the good things T does for us. I don’t mind going back on ADT.

novatimo profile image
novatimo in reply to 6357axbz

I may be in a similar boat as you. When your MO told you to get a GA68 PET-PSMA at UCLA, my understanding that it's only available in a clinical trial (if you qualify). Does she need to contact UCLA to recommend you for the PSMA scan, or do you just call UCLA and ask to participate?

Concernedwife24 profile image
Concernedwife24 in reply to novatimo

You can pay for it. 3000.$. Worth it to us to know that my husband only had some in pelvic lymph nodes after rp. Radiation next, on ADT now.

6357axbz profile image
6357axbz in reply to novatimo

She made the arrangements and UCLA called me to schedule. It’s available off trial if you pay. Insurance doesn’t cover. It’s about $2700

6357axbz profile image
6357axbz in reply to novatimo

I’m not sure if that trial is still open. The doc I met with said all the data was already submitted to the fda and they were satisfied. What they are waiting for now is for the fda to inspect their Gallium production operation. He told me that was delayed due to COVID. As soon as that is completed he expects their scan will be approved.

LearnAll profile image
LearnAll in reply to 6357axbz

Thanks. I understand that the decision was based on your testosterone came back to normal levels.

6357axbz profile image
6357axbz in reply to LearnAll

No, that wasn’t a factor. The decision was based on allowing PSA to climb to a point the the GA68 scan was able to effectively target metastices

Schwah profile image
Schwah

You need a prescription and to pay $2800.

Schwah.

Rexwaterbury profile image
Rexwaterbury

Columbia hospital is having a clinical trial in which a Psma scan and liquid bx are free.

TJGuy profile image
TJGuy in reply to Rexwaterbury

Where is Columbia hospital located?

Rexwaterbury profile image
Rexwaterbury in reply to TJGuy

New York City.

jfoesq profile image
jfoesq

FYI I was dx in May/June 2012 with 4-5 meets and PSA in 40s. I had prostate surgery after 6 months of Lupron. I also received radiation of my largest met, in my left acetabulum (hip /pelvis area). I responded well to all treatments including the Lupron. At some point early on, Zytiga was added to the treatment. I went on 3 vacations: the first one lasted 20 months from Lupron shot; the 2nd , I believe was 12; the last was only about 6. My doctor let the PSA rise well past 1.0 each time. Hard to recall the numbers for the 1st 2 times, but, the 3rd time, I think it reached 5.0 (which concerned me). It is what it is- but I am still here-

Wish you the best whatever you and your docs decide to do

Dfrige profile image
Dfrige

Same boat for me. This is my second 8-9 month holiday. PSA slowly on the rise averaging .05 a month. Currently at .18 as of last month. I started the COC protocol as we as high dose vit c IV's. Will have PSA done soon to see if it's working.

PSMA is in back pocket if not. My doc told me Stanford has a clinical trial that is free. Not sure if that is still the case.

I'm also looking into BAT therapy. Some really interesting results from it.

Good luck.

6357axbz profile image
6357axbz in reply to Dfrige

Stanford currently not accepting patients for their Phase I/2 GA68 trial.

RonnyBaby profile image
RonnyBaby

Interesting to read your story (where you are at now) because the timing fits into my current situation.

I'm also on an ADT holiday - which I suspect is about to come to end soon. My PSA is probably close to 2.0 (a good guess) because my last reading was 1.3 and rising fairly quickly.

I had my last Lupron shot in July of 2018 and my 'T' came back to normal - so it is not a total surprise that I'm where I'm at. I was a G9 / T3b / node positive at Dx in May of 2017.

My next step is probably mono-therapy with Casodex ( I refused any more Lupron because it drove me totally NUTZ).

Maybe my numbers are rising due to more lymph node involvement (a good, educated guess) which could respond to MORE radiation treatment. I had a few 'hot spots' in the pelvic lymphatic system that were treated with radiation - but not the max - so I assume there's more wiggle room left' to tackle it again.

My MO recently mentioned a PSMA test / more imaging / scans could be next, to see if we can find the source (and hopefully) treat it. ADT will be part of the game plan.

I wish you well on your continuing journey ....

6357axbz profile image
6357axbz in reply to RonnyBaby

Thank-you

Boywonder56 profile image
Boywonder56 in reply to RonnyBaby

Im with you rb ive ben on lupron since early 2017 and even first shot wound me up like a cheap watch....ff 14 shots later and the last one put me in the nervous hospital for a week....i ask doc why and standard answer...stuff works....yeah but the price some of us pay....thinkin of going wimpys way and wacking em off....seeing as vactions are out of question....

j-o-h-n profile image
j-o-h-n

Have some chocolate chip ice cream (two scoops) on me..........

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 07/12/2020 2:01 PM DST

6357axbz profile image
6357axbz in reply to j-o-h-n

Thanks John, I’ll send u the check 🤣

j-o-h-n profile image
j-o-h-n in reply to 6357axbz

It would be my pleasure..... just to see you're doing okay....

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 07/12/2020 2:30 PM DST

monte1111 profile image
monte1111 in reply to j-o-h-n

I seem to be doing okay.... I'm going out for rib eye, baby back ribs and spicy chicken wings. I'll send u the check 😎

j-o-h-n profile image
j-o-h-n in reply to monte1111

Don't forget to include the tip.........

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 07/12/2020 5:13 PM DST

monte1111 profile image
monte1111 in reply to j-o-h-n

Oh, yes. The tri tip. Thanks for reminding me.

j-o-h-n profile image
j-o-h-n in reply to monte1111

and don't forget the Doggie bag....(in your case a cat bag)

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 07/12/2020 5:39 PM DST

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