repeat genetic testing

[myamic]

Should one get genetic testing again after using Xtandi/Zytiga/for a period of time to see if there have been any mutations which might be helpful in deciding what direction to take next? thanks

[Tall_Allen]

It would be unusual and very expensive, but if there are metastases large enough to biopsy and you have the money, why not? IHC would probably be more useful than a second somatic genomic test.

[Schwah in reply to Tall_Allen]

That’s one of the few negatives with the newer imaging. It’s so good that the Mets found are often too small to biopsy. I was told at ucla that my recent met at L-5 was just too small to biopsy do I just zapped it now as opposed to waiting for it to get big enough to biopsy.

Schwah

[pjoshea13 in reply to Schwah]

The case against zapping a tiny bone met is that it might be desirable to keep radiation in reserve for when you really need it.

But you still have an oligo-situation? & are aiming for a durable remission? Or a Scholtz "cure"?

-Patrick

[CAMPSOUPS in reply to pjoshea13]

I think you can zap bone mets more than once. I used to think otherwise.I hope to get clarity on that point.

[pjoshea13 in reply to CAMPSOUPS]

True, depending on initial dose.

[Schwah in reply to pjoshea13]

Well when I first was diagnosed with 3 mets 3 or 4 years ago Scholz hit it with chemo, 24 months of Lupron and Zytega and SBRT to the 3 mets. The hope then was a long term remission or even a cure. I went on an 18 month “vacation” and I needed to do PSMA scans every 6 months to monitor because I still had 60% of a healthy prostate (from focal Chryo) so my PSA was bound to go from .02 to 2 or 3 (which it did) even without any new cancer. When they saw the one new met I zapped it again. And I’m back on Lupron , Zytega and I paid out of pocket for early Provenge. Back down to .03 and hoping for another vacation starting this summer. So with the new met, cure is likely not any longer in the cards. But hoping for a long term remission again. I did a lot of research on the Provenge and saw that in their trial, the lower the starting PSA, the longer the extension of median survival even when compared to others with the same lower PSA. I also learned that combining it with the radiation and Lupron (right after) increased the killer t-cells substantially up to two years later. Scholz wanted me to even add Yervoy but the side affects scared me and I passed on that. It will be interesting to see how it goes. I suppose no way to measure the impact of the Provenge but with the high price I paid for it, I gotta believe it will help.lol.

Schwah

[myamic]

Thanks...not familiar with IHC but will look it up

[6357axbz]

My mo recommend another genetic test (the blood sample variety) for me in October 2021 because she said the new test could show mutations not yet known when I had my last such test in 2019.

[Tall_Allen in reply to 6357axbz]

Was it useful?

[6357axbz in reply to Tall_Allen]

I have not taken the test yet.

[Grumpyswife]

My husband had the Guardant test ~4 years ago and it came back inconclusive. Today we started with a new MO and he did another Guardant to see if Grumpy might qualify for Olaparib. He has had Xtandi, abiraterone and darolutamide since last testing.

[CJ4J]

My husband's had 3 guardant tests. They showed low tumor burden and his Dr said he will repeat again. If I understand this right, there needs to be a higher tumor burden to give better results. If Mayo orders the test, the total cost will be no more than $100 out of pocket. It's the agreement that they have made with Mayo Clinic.