PSA still at <.10 but CT scan and NM bone scan done 11/07/18 shows new met . Prior test done 11/01/17

[benninger]

Dr. said Prostrate ductal adenocarcinoma does not always produce psa and he wants to do scans in 6 mo. again. I guess my question is should we be looking into clinical trials at this time . Currently on loupron, prednisone and zytiga also he tested positive for the atm gene. New met is 9mm in right iliac bone.

[Tall_Allen]

Do you mean your blood (germline) tested positive for a mutant ATM gene, or a tumor tested positive (somatic)?

[benninger in reply to Tall_Allen]

Tumor was tested by foundation one

[Tall_Allen in reply to benninger]

Here's a list of clinical trials of PARP inhibitors:

pcnrv.blogspot.com/2018/02/...

[benninger in reply to Tall_Allen]

Do you think we should be looking into them now or wait until after his next scans in 6mo. Thank you

[Tall_Allen in reply to benninger]

What do you gain by waiting?

[benninger in reply to Tall_Allen]

Talked to his Dr. at Hillman and he said no to the clinical trials. He said they would not be able to tell if the medicine was working or not because of it not producing PSA. He said we just need to do scans to watch it.

[Tall_Allen in reply to benninger]

I don't think that ANY of the clinical trials on that list have a requirement that your PSA be high. The best way to see if you qualify is to call and ask. They are usually happy to hear directly from patients.

[Hidden]

PARP inhibitors can be effective against PCa with the ATM mutation. Something to discuss with your doctor.

[benninger]

He said that would be our next step after the zytiga stopped working. But now he said we would do another ct and bone scan in 6 mo.

[Hidden in reply to benninger]

Sounds like your doctor is on top of it.

[benninger]

His alkaline phosphatase was 47 but I don't see Chromogranin A listed.

[benninger]

Axumin pet scan done Nov.15/2017 showed numerous mets (shoulder, right and left iliac bone, posterior ischium and femur). They have not increased in size. Gene mapping showed Atm L807* , MYC1 amplification, RAD21 amplification, KDM6A R219fs*33 and MCL1. I will ask for the Chromogranin test when we go back in Jan. We really were taken off guard with the new met when his PSA was at >.10 thank you

[NurseRatched in reply to benninger]

You are not alone; this has been going on with my husband (who is 67) for about 18 months. Undetectable PSA, but new tumors. It's not common but it does happen. In his case, it was discovered because he complained of pain, so scans were ordered. Initially put on Zytiga & prednisone (in addition to lupron) and he's now scanned quarterly. More new tumors while on Zytiga (his AlkPhos increased something like 900%), so now trying Xtandi.

He had genetic testing done to no avail; I do not know if that differs from "full Gene Mapping" mentioned by Nalakrats.

Also not sure if he's ever had a Chromogranin A test, which I intend to research.

[benninger in reply to NurseRatched]

Glad to know we are not alone. We are going to ask about Chromogranin A test too. Good Luck we are praying for answers.

[charlesmeyers1964]

wait fora while there isn't much out there other then what i took called PROVENGE

[benninger]

Will try to get the DR. to order it. Do you think the zytiga is still working? thank you