Duration of ADT+Zytiga? Thoughts on when to stop or get another opinion?

[PGDuan]

Hi all, I don't post a lot but am hoping for some input on WHEN to stop ADT+Zytiga. I'm finishing 12 months soon and trying to decide whether to go on to 18. Like many of us, my case is a bit unusual - here are the essentials:

-Diagnosed 52yo, GS 4+3, PSA 11 and then 16 after biopsy. Clean CT scans and clean PSMA PET in advance of RALP @ Stanford. P2CN0 after surgery - no margins, 0/15 lymph nodes....but persistent PSA at 4.0 after surgery. Axumin scan identified 2 avid lymph nodes, and second reading of PSMA PET seemed to confirm the same. Started Lupron+Zytiga and completed 72gy of EBRT in January. PSA has been undetectable at <.05 ever since.

Given the good results of EBRT + ADT, it might seem reasonable to continue with 18 months of ADT+Zytiga. On the other hand, a second opinion at UCSF mildly suggested that only 6 months ADT + the adjuvant EBRT might be sufficient.

Side effects haven't been too bad...but as expected I'm losing muscle tone, feeling fatigued, and feeling beaten down. In short, I'd really like to finish the ADT+Z and see what happens, but hate to make a bad decision given how awful this beast can be.

I'll be seeing my MO again in a few weeks and expect that she'll vote the full 18 months. Still, I've seen a newer 2019 study suggesting benefits of longer duration ADT are based mainly on the number of risk factors one has after primary surgery (ncbi.nlm.nih.gov/pubmed/307.... I only had 1 risk factor after primary treatment (PSA>0.5), whereas benefits were best for those with more than 1 risk factor (the other two factors were pT stage ≥pT3b and pathologic Gleason ≥8.)

Thank you in advance for any ideas or input!

[tallguy2]

Congrats on the undetectable PSA!

If you have metastatic PCa it is my experience that you (and I) will be on ADT for life. The physicians will simply add more drugs to the mix. Yes, some, including me, were given an "ADT holiday" but this was a disaster IMHO. I am never coming off of ADT.

I anticipate that Zytiga is in my very near future so I look forward to the responses you get on your question.

Best wishes!

[PGDuan in reply to tallguy2]

Thanks Tall Guy! Good luck - the Zytiga was quite effective in my case.

[Victorq1 in reply to tallguy2]

HI TALL GUY2

I HAVE BEEN ON ZYTIGA AND PREDNISONE FOR 2 MONTHS ,NOW

PREVIOUSLY EBRT AND ADT.I WAS TREATED WITH ONE MORE "SHOT" OF RADIATION

I WAS IN PAIN UNABLE TO WALK.

IT IS GETTING BETTER ALREADY.

WEL LETS HANG IN THERE

ITS A BATTLE FOR TIME.

THERE WILL BE ANOTHER MEDICINE OR INVENTION SOON.

I HOPE !

YESTERDAY IS HISTORY,TOMORROW IS MYSTERY

LETS LIVE TODAY.

REGARDS TO ALL

victorq1

PS

I have to use capital letterS

i do not see well !

[timotur]

I asked my MO this after successful HDR-BT and IMRT, hoping to do only 6-12 months, but he said 18 months since I was PSA > 20 at dx and N1M0.

[PGDuan in reply to timotur]

Thanks for sharing- seems like I’m on this road too for at least 18 months.

[Tall_Allen]

For adjuvant ADT (to salvage radiation) with detectable lymph nodes, 2-3 years, but no less than 18 months is preferable. Maybe you can get away with only 18 months because of the Zytiga. Also, you caught it earlier because of the Axumin scan.:

pcnrv.blogspot.com/2017/12/...

The citation you provided is irrelevant for you because you are stage N1.

[PGDuan in reply to Tall_Allen]

Thank you for the insights - and clarification of my status. My original post-surgery was staged N0, but you’re right that I should really think of it as N1 given the subsequent learnings. So, a minimum 18 months it is...

Again - thank you for all the good work that you do!

[HopingForTheBest1]

Have you had genetic testing? It could give you viable treatment options based on precision medicine.

[PGDuan in reply to HopingForTheBest1]

I haven't, but am thinking its a good idea. Was yours prescribed through your MD?

[HopingForTheBest1 in reply to PGDuan]

Yes, I did the Color saliva test. Also did Foundation Medicine test which uses tissue sample from biopsy or from surgical prostate removal, and is a lot more comprehensive. I had both. There is a third option by having a blood test.

I was diagnosed with BRCA2 mutation. Now on a PARP inhibitor as a result, and so far PSA is undetectable.

Definitely recommend all high risk PC patients get it done.

[Don_1213 in reply to HopingForTheBest1]

Did COLOR turn up the BRCA2? I had Color done and it came back with nothing

[HopingForTheBest1 in reply to Don_1213]

Yes, I did Color and Foundation Medicine. Both came back positive.

[Don_1213 in reply to HopingForTheBest1]

OK thanks! It wasn't clear in the Color results exactly what they tested for.. but if you came back positive I'd have to guess they tested for BRCA2..

[HopingForTheBest1 in reply to Don_1213]

Yes they did.

[Hidden]

Congrats on your low numbers. I started Lupron 9 months ago and my PSA fell from 1.5 to .3 but now is at .65. Another PSA and T test on Monday. Worried not going to undetectable like a lot of you. Any thoughts???

[PGDuan in reply to Hidden]

Hi there. have you considered zytiga? I’m not an expert, but i understand that it shuts things down even further to give your immune system a better chance to finish off the cancer cells.

[Hidden in reply to PGDuan]

I am waiting to have my PSA test on Monday then meet with my MO. I have some mets - but last scan Lupron was holding them in check. I have heard Zytiga is VERY expensive. Are there any ways to get it at a reduced cost?

Thanks.

[PGDuan in reply to Hidden]

Yes, the Zytiga is expensive (around $1k/month), but my insurance covered it all and the manufacturer also provides a co-pay assistance so it really didn't cost me anything extra. I also heard it is just coming off patent so that generic/less expensive versions are now available.

[Hidden in reply to PGDuan]

I sure hope so. Is your insurance Medicare + a secondary plan?

That is what I have.

[PGDuan in reply to Hidden]

Sorry- I am on Anthem. I’m sure there are others on this forum with Medicare experience relating to Zytiga. If they don’t cover the full amount - keep in mind that the manufacturer Janssen Pharmaceutical covers the copay, I think up to $6k per year. Hope this helps!

[Hidden in reply to PGDuan]

Really helps - thanks - are you on Zytiga now?

[PGDuan in reply to Hidden]

Yes, I went on a few weeks after the Lupron shot. I don’t think there are any extra side effects- just the same ones as Lupron. Most people have had good results, although you have to take prednisone with it and keep an eye on your liver enzymes (mine ran up the first few weeks but then normalized).

[Victorq1 in reply to PGDuan]

HI PGDuan and all

I RED A BOOK ABOUT PROSTATE CANCER WRITTEN BY A FEMALE DOCTOR.

IF INTERESTED ASK ME HER NAME.

TO MY ABSOLUTE SURPRISE SHE WRITES

ABOUT TESTOSTERONE AND PC

copied from her book:

----------------------------

1drv.ms/u/s!AlCbfdk-uFdIhTW...

VERY INTERESTING !

ANY COMMENTS FROM ANYBODY.

I WAS SHOWING IT TO MY MO

AND HE RETURNED THE ARTICLE WITHOUT FURTHER COMMENTS.

[PGDuan in reply to Hidden]

Definitely discuss with your MO. In my case we hit the PCa with radiation and Lupron plus Zytiga (all after the unsuccessful RP surgery). I am not sure which step drove it down to undetectable — or if it was just the combination of everything. If you haven’t added Zytiga it is worth looking into it.

[Hidden in reply to PGDuan]

Yes we have looked at that but decided not to use it while the PSA was still coming down. Sure appreciate your insight.

Tom

[PGDuan in reply to Hidden]

Seems like a thoughtful strategy. Best of luck. Stay on top of it and keep in mind that there are many potential treatments. One size certainly doesn't fit all.

[Hidden in reply to PGDuan]

Thanks PG.

Appreciate your input.

TC

[rococo]

Never understood the importance of keeping undetected. On and off meds kept Psa below 5 than 7 For 18 yrs and think of raising it to 10 but maybe not because renewing a drug cycle may fail giving me less time to manipulate these drugs before Psa get out of hand, trickey business tricking and controlling the cancer. Rocco

[j-o-h-n]

It's as easy as duan two three..... stay the course....of course....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 10/11/2019 1:17 PM DST

[SeosamhM in reply to j-o-h-n]

Classic j-o-h-n.

[PGDuan]

Thanks John - always love the humor!

[Hidden]

PG - You have an uphill battle to undo unnecessary damage to your body and your immune system. The ADT should have been the one and only treatment for a while to see how it went (as long as the PSA was going down, it was working, and that would likely have left enough immune system to deal with the pelvic tumors over a year or so). Now you have damaged your immune system a lot more with the Zytiga. Taking prednisone only partly replaces the missing things needed for health and cancer killing. You would be lucky to have 50% of your immune system still working. If you can get away with not taking the Zytiga for a while that would help. A raw food and smoothie diet would help the most, as that is the best base to get back (it takes months) some of the 5,000 odd gut species that have been wiped out with all the poisons you are taking. With the return of the gut biome you get the immune system into higher gear. If you need to beat back the cancer while you get your life back, use sodium ascorbate via IV to assist. That should have a higher kill rate than any poison regimen.

Sorry to be so blunt, but I was also thrown down the well by "the big cancer money machine" and I know what it feels like to be lied to and misled, and sent on the short route to the Pearly Gates. At least I survived long enough (thanks only to Vit C) to read, experiment, and get some anti-BS facts, and I am slowly seeing some daylight - and some hope to one day climb out of the well. Good luck to you on your journey!

[Victorq1 in reply to Hidden]

I KNEW PEOPLE WITH PC

WHO DID NOTHING

AND ARE LONG DEAD