PSA still at <.10 but CT scan and NM ... - Advanced Prostate...

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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 profile image
16 Replies

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.

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benninger
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Tall_Allen profile image
Tall_Allen

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

benninger profile image
benninger in reply toTall_Allen

Tumor was tested by foundation one

Tall_Allen profile image
Tall_Allen in reply tobenninger

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

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

benninger profile image
benninger in reply toTall_Allen

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

Tall_Allen profile image
Tall_Allen in reply tobenninger

What do you gain by waiting?

benninger profile image
benninger in reply toTall_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 profile image
Tall_Allen in reply tobenninger

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.

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

benninger profile image
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.

in reply tobenninger

Sounds like your doctor is on top of it.

benninger profile image
benninger

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

benninger profile image
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 profile image
NurseRatched in reply tobenninger

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 profile image
benninger in reply toNurseRatched

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

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

benninger profile image
benninger

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

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