Oligometastatic HSPCa (OMHSPCa) pati... - Fight Prostate Ca...

Fight Prostate Cancer

2,910 members1,175 posts

Oligometastatic HSPCa (OMHSPCa) patients.... Time to EXTEND your Quality of Life and Progression Free Survival with MDT

NPfisherman profile image
39 Replies

Greetings FPC'ers,

Been a while since I posted.... busy with projects, but Marnie sent me an article, and I could not resist putting this study out. Thanks Marnie !!!

As you know, I am a believer in MDT and SBRT for MDT. From the recent ASTRO conference, I give you the EXTEND trial results. MDT is making a difference for oligometastatic HSPCa patients in time off ADT (what I call vacationing), as well as PFS--see below:

urotoday.com/conference-hig...

If you are an OMHSPCa patient, then you should be looking at intermittent ADT with MDT as an opportunity to change your treatment paradigm (unless you are already on it). Sure, there are posters, bloggers, Facebook friends, etc that will tell you NOT to go this route, but we have seen STOMP, ORIOLE, and now....EXTEND. Those people probably still think there is no abscopal effect despite ORIOLE.

More time in a eugonadal state-T>150 ng/dL .. feeling more like your old self... no brain fog...more energy...

The Science is Coming !!! and now, it gives you some treatment time off for good behavior....or bad behavior... whatever you like...

Don Pescado

Written by
NPfisherman profile image
NPfisherman
To view profiles and participate in discussions please or .
Read more about...
39 Replies
GreenStreet profile image
GreenStreet

very interesting and encouraging. Thanks for posting. 👍That is what I am doing. Currently “on holiday “ but don’t know how long it will last so enjoying while I can!

NPfisherman profile image
NPfisherman in reply toGreenStreet

Thanks Green Street,

My last vacation lasted 15 months until PSA started going up.. 22 months total vacation. I follow USPSA test, and when it started changing, then I waited for the number to get above 0.5 to do Pylarify scan. Set things up with my MO to get scan and f/u for treatment. My initial total time on tx was 22 months.

Every patient will be different. My amigo Josh has been on vacation over 4 years now and still going... may his vacation continue on...

I also did some misbehaving on vacation, so my bad boy behaviors may have shortened my vacation time.... I am back on treatment, and if the USPSA stays undetectable, then I will be back on vacation in June.

May your vacation last a long time... Good luck...

Fish 

GreenStreet profile image
GreenStreet in reply toNPfisherman

wow you did well. Good luck going forward. I think mine will be pretty short. Most recent PSA was 0.03 up from 0.01 3 months before. But you never know. I will have a Gallium PSMA scan at 0.2 or a bit before if doubling time is aggressive. Thanks for your thoughts 👍

NPfisherman profile image
NPfisherman in reply toGreenStreet

GreenStreet,

You need another PSA to make sure it is not lab error. It looks like you are in the same boat as me... about 6 weeks PSADT ... utilizing that information, you will scan in the new year... for Pylarify, a PSA over 0.5 had better sensitivity is my understanding. Talk with your MO and RO. Enjoy the vacation. You have been fighting since 2015. Fight on...but rest now...

Best wishes,

Fish 

6357axbz profile image
6357axbz

I was in Chad Tangs trial, the group w/o MDT after having my prostate zapped. He put me on a holiday after 6 months of Lupron/Zytiga, post prostate radiation. wanted me to wait till my PSA rose from undetectable to 2.0 before MDT. My MO intervened and had me get a GA68 scan at UCLA after PSA reached 0.5. After 6 more months of Lupron/Zytiga he zapped my Mets, pelvis, 2 ribs and my para-aortic lymph node string. That was done Sept/Oct 2020. My 2nd holiday began July 2022 and I’m still on it.

Seasid profile image
Seasid in reply to6357axbz

imtetesting

NPfisherman profile image
NPfisherman in reply to6357axbz

6357axbz,

Thanks for participating in this trial. I think your RO was wise to treat the lymph node string... Whenever an area has a string of close nodes, then it just makes sense. Enjoy the vacation. Long may it last !!!

6357axbz profile image
6357axbz in reply toNPfisherman

that’s what Dr Tang said. Thanks NP

NPfisherman profile image
NPfisherman in reply to6357axbz

Sounds like you are in good hands... my MO said this is the first of most likely several vacations...Let's face it... ADT is a necessary tx, but the SEs suck...

Fish

6357axbz profile image
6357axbz in reply toNPfisherman

is 0.5 PSA during vacation you signal to get a Pylarify scan? Did the scan show any new Mets?

NPfisherman profile image
NPfisherman in reply to6357axbz

It is... 0.5 is when I started setting up the Pylarify scan... I was at about 0.7 or so when I was scanned. I wanted to feel confident that I got a solid "look" for tx. My first scan was Axumin in 2018 with a PSA of about 2.8. They found one tumor of about 1.3 cm first scan. This time, one tumor of 0.6 cm. My oligo journey continues.

Fish

6357axbz profile image
6357axbz in reply toNPfisherman

mine too NP. Keep it up👍

NPfisherman profile image
NPfisherman in reply to6357axbz

Thanks...you too.

6357axbz profile image
6357axbz in reply toNPfisherman

and you’ve been zapping these new Mets as they are identified?

NPfisherman profile image
NPfisherman in reply to6357axbz

Indeed...my plan is to do SBRT to the met and do adt plus abi for a period of time. I synchronize tx with eligard or lupron administration to utilize the benefit of testosterone flare. Both MateoBeach and I have written on how this is done.

6357axbz profile image
6357axbz in reply toNPfisherman

when I restart my MO wants me on orgovix , instead of Lupron, and zytiga

NPfisherman profile image
NPfisherman in reply to6357axbz

Orgovyx does not have testosterone flare, so no need to synchronize with SBRT. Orgovyx is better if you have cardiac risk factors. Best of luck on your path...

Fish

6357axbz profile image
6357axbz in reply toNPfisherman

how high did your PSA get before you were diagnosed?

NPfisherman profile image
NPfisherman in reply to6357axbz

Now, that is an interesting part of my story. My PSA was about 5. Something before getting biopsy. My Urologist put me on Cipro post biopsy which had STOPPED being used due to E. Coli resistance. Needlessto say, I ended up with sepsis and prostatitis. My PSA went to 20 for a few days, until I joined the apalutamide trial and got a 3 month Lupron shot. It went to undetectable and stayed there. Did the sepsis and prostatitis episode help spread the cancer?? Likely, IMHO...

Fish

6357axbz profile image
6357axbz in reply toNPfisherman

mine was 5.2 but 12/12 prostate sectors biopsied were positive and I had 3 bone Mets identified. Maybe my cancer, and maybe yours, doesn’t express much PSA.

NPfisherman profile image
NPfisherman in reply to6357axbz

I had 1 of 16 needles positive, but 20% of prostate involved.The poor technology of TRUS biopsy. I have lytic bone lesions.. 1 lesion only.. I need to research if lytic lesions have lower SUV...

Fish

Nusch profile image
Nusch

Many thanks for posting. I‘m following a similar path (see bio). Just this time I will stay on ADT for 18-24 months to support cure.

NPfisherman profile image
NPfisherman in reply toNusch

Nusch,

That's what my MO said.. after my initial SBRT, he felt it was like I was nonmetastatic and 18-24 months was indicated for tx--I did lupron/abi. This time around, it will be just a year...

Fish 

Nusch profile image
Nusch in reply toNPfisherman

Wishing you all success!

NPfisherman profile image
NPfisherman in reply toNusch

Same to you. In the almost 5 years since my diagnosis, the treatment mileu has changed dramatically. Initially, my MO was not on board with SBRT. Now, he has seen the results in a number of patients. MDT is here to stay... The APCCC agrees with me...

Good luck on your journey...

Fish 🐠

Seasid profile image
Seasid in reply toNusch

good idea to support cure.

cujoe profile image
cujoe

Don Pescado - MedPage had a review article out today on the same ASTRO presentation by Dr. Tang. Same material from a different source:

Metastasis-Directed Therapy for Prostate Cancer Increases PFS, Time off Hormones — Radiotherapy led to "dramatic" slowing of progression, increased time with normal testosterone by Charles Bankhead, Senior Editor, MedPage Today October 27, 2022

medpagetoday.com/meetingcov...

Confirms your perspective on the benefits (esp. to QOL) of MDT.

Keep that Science Coming, Young Man. Ciao - K9

NPfisherman profile image
NPfisherman in reply tocujoe

K9 Enemy of the State,

Show me someone pushing continuous ADT for OMHSPCa, and I will show you someone that does NOT have to be on ADT. The decreased cardiovascular risks and other risks of IADT vs continuous plus QOL make this kind of a no brainer.. The chance to feel "normal" for a period of time(s) makes this a logical choice if you know about it. There is still the factor of uneducated urologists that rx for lupron and keep patients in the dark for monetary gain or out of ignorance.

The Science is Coming, but will professionals follow it??

DD

cujoe profile image
cujoe in reply toNPfisherman

Maybe only if we push them to?

NPfisherman profile image
NPfisherman in reply tocujoe

K9 Enemy of the State,

It weighs on me as a professional that other professionals fail to toe the line of treatment standards, but I think it falls on organizations to police what their members do...or the lawyers.. the latter will surely enforce the standards in a manner urologists won't like...

DD

MateoBeach profile image
MateoBeach

This is one of the most important treatment articles / posts of the year. (Was also re-posted on APC). Love the careful discussion and rational for IADT with eugonadal recovery after SBRT to oligomets. The graphical data presentation is much better than what we usually get in study summary articles. 👍👍👍

I am approaching my own modified BAT (longer cycles) as an up-leveled or extreme form of IADT. (you could say “IADT on steroids” 🤣)

NPfisherman profile image
NPfisherman in reply toMateoBeach

Pabilito,

Kudos to Peter Mac's lady- marnieg46 for bringing it to my attention. As for being reposted, it is not the first time that happened to science posted here, and at least I got acknowledged this time. My preference is that people say, "I found this on Fight Prostate Cancer forum." The forum first. I think OMHSPCa patients need to know that there are easier, safe ways to deal with their disease than continuous ADT. I have read people posting that the only reason NOT to do continuous is if you just can't tolerate it anymore. Ridiculous. IADT reduces risk of building to castrate resistance.

Please keep us updated on your progress. Appreciate your posting that info here also. "IADT on steroids" indeed.. Life with testosterone is normalcy, and if patients can have more of that without it being inferior, then why the heck not?

My 2cents fwiw...

DD

Papillon2 profile image
Papillon2

👍

JWPMP profile image
JWPMP

I'm thinkin,, though, if you're unable to have MDT, a vacation would be unadvisable?

NPfisherman profile image
NPfisherman in reply toJWPMP

Hi Jim's wife,

I read your profile that you created for him. Because he is a G9, then I would not advise a vacation for him. There was a study done that showed that G9/G10 patients did not fare as well doing ADT vacations as G8 or less. None the less, he has been on treatment for years. He had the brachytherapy in 2021, and may have benefitted from an abscopal effect in regards to his other tumors, as well as starting abiraterone.

If he needs a break, talk to his MO and see what he advises.....Even a short break of 6 months or so from ADT plus abi does wonders for the brain fog, low blood counts, and energy levels...

Fish

JWPMP profile image
JWPMP in reply toNPfisherman

Thank you so much for this information, really appreciate it.We did talk to his MO last week (also discussed in January). They feel that since his bloodwork is "pristine " and PSA undetectable, unless the SE's are severely affecting his QOL, that they'd rather not rock the boat with his treatment. They did however, tell him it was his decision. He has decided to hold the course. Mood swings are pretty harsh, and of course the hot flashes, but that's the worst of it. Thank you again

NPfisherman profile image
NPfisherman in reply toJWPMP

I think most of us experience plenty of both while on ADT plus ARPI drugs.... The mood swings almost cost me 4 compadres, and the hot flashes are just so dang irritating... Since he was oligometastatic prior to starting abiraterone, you may see an improvement on his next scan.

All the best,

Fish

JWPMP profile image
JWPMP in reply toNPfisherman

Thanks for sharing that! It's encouraging. The hot flashes are extremely annoying to him, but manageable when he's diligent on his Total Gym. The mood swings are another story. I'm sorry to hear it, but relieved when I read posts that these are common. Difficult to deal with when they're relentless. I've thought of taking a mini "vacation", Especially since he has no scans, appointments, etc for another month.

Anyway, truly appreciate you sharing this info.

NPfisherman profile image
NPfisherman in reply toJWPMP

I think a vacation for you is a great idea. This disease takes a toll on patients and family... Just getting away and taking your mind off everything can do wonders for mental health... Hang in there...

Fish

Not what you're looking for?

You may also like...

Metastasis Directed Therapy (MDT) is here to stay for Oligometastatic Patients!!! Part (2) Cryo and Thermal Ablation

Greetings FPC Members, Metastasis Directed Therapy (MDT) is becoming a standard of treatment in...
NPfisherman profile image

Understanding the differences in types of radiation and why the ORIOLE Trial showed SBRT to be effective for Oligometastatic patients

Hello FPC crew, Not to be confused with 2 Live Crew...Recently, a post appeared on another forum...
NPfisherman profile image

Metastasis Directed Therapy (MDT) is here to stay for Oligometastatic Patients !!! Part(1) SABR/SBRT

Greetings FPC Members, Metastasis Directed Therapy (MDT) is becoming a standard of treatment in...
NPfisherman profile image

The 2024 Advanced Prostate Cancer Consensus Conference (APCCC) meeting-- Chock full of Testosterone...

Greetings FPC Forum Dwellers, Marnie passed me some solid information on the APCCC...and it is all...
NPfisherman profile image

Oligometastatic prostate cancer: Reality or figment of imagination?

New paper below, [1] full text. Oligometastatic PCa has been controversial from the start, with...
pjoshea13 profile image