Scans

[Andrevz]

Hi

I have had 2 scans, Bone Scan and 3 D scan, PSA went up from 11 to 13 .3 and Test. Is 0.3

On Zoladex treatment for 6 years now

Scans came back showing me Clean outside the Prostate, good news, but The Oncologist states that the Cancer is now resistant to the Treatment, any advice on this?

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Apalutamide, a second-line ADT agent is approved for Non-metastatic Castrate Resistant Prostate Cancer. fda.gov/Drugs/InformationOn...

[Tall_Allen]

Both Erleada and Xtandi have been approved for use with non-metastatic castration-resistant PC. You can discuss the side effects of each with your oncologist. It is likely that there are micrometastases too small to be seen on a bone scan.

[joekaty in reply to Tall_Allen]

So am I correct in understanding that when scans appear to have cleared but PSA is rising- then it is likely micro-metastases too small to yet be seen on a scan.

[Tall_Allen in reply to joekaty]

Yes - that is likely

[joekaty in reply to Tall_Allen]

Ok. I figured as much with my husband. He’s young and the research hospitals have said his cancer is VERY aggressive. A year ago he almost died at diagnosis due to extreme bone marrow infiltration. 3 weeks in ICU. His scans are NOT clear but after having stopped Taxotere in Feb ...MRI showed lesions in the marrow of his cervical spine. He is in extreme neck and shoulder pain. Dr. still says they are “healing lesions” and I’m starting to get very frustrated with what sounds like it is BS. We have 6 children ages 6-15 and I need to have a more accurate understanding of what’s going on. I’ve asked him to be more blunt repeatedly but he’s young and I just don’t think he has it in him. He just keeps telling me how lucky we are that Joe is still alive... I appreciate Dr positivity but sometimes people’s situations 39 yo facing being a widow and 6 children- require absolute honesty. Any thoughts appreciated...

[Tall_Allen in reply to joekaty]

Has there been a pathological or genomic analysis done on any of his mets? Perhaps it is some rare type amenable to some alternative therapy.

[joekaty in reply to Tall_Allen]

Yes, had genomic analysis done and Mary Crowley center in Dallas has it. They specialize in only genomic mutations and have a worldwide database that they check daily against their patients. They do have some trials but they’re phase 1 and we’re going to ride out everything else until we’re completely out of options. Joe’s mutations were unusual and all ones that tend towards highly aggressive and poor prognosis- young age, high mortality, short time from diagnosis to death. Sorry to be so blunt, but again, I’ve been looking for someone to just shoot straight with me. We did see Dr Staddler at U of Chicago and he looked at Joe’s mutations and, though he is not the greatest with bedside manner- he gave me a hug and told me he was sorry as we left. He’s also the one who recommended Joe put on Xtandi so early. He said to not wait until doubling as MD Anderson recommended, but two small consecutive jumps and get on it -which is what we did but looks like Xtandi is not working. So appreciate your knowledge and willingness to share.

[joekaty in reply to joekaty]

So again, to be blunt, aside from alternative treatments- I’m really looking for prognostically what we could generally expect.

[Tall_Allen in reply to joekaty]

What were the clinical trials? do you know the NCT#s?

[joekaty in reply to Tall_Allen]

You are definitely out of my league but I’ll try to answer. Is NCT’s circulating tumor cells? I’m not sure. He never had a tumor. Prostate only slightly enlarged and couldn’t be biopsied bc he was bleeding to death. Eventually they had to do a bone marrow biopsy - 4 dry taps and they finally got a scraping from the core that showed the cells were prostate cancer. They had thought it was leukemia or lymphoma. Only hint at prostate cancer was PSA was 556. But lymph nodes were diffusely enlarged throughout his body.

Mutations in foundation one report were:

PTEN loss (some trials but has been rejected from all but phase 1)

CIC loss exons 2-20

FAS loss

Microsatellite MS-Stable

PIK3R1 truncation exon 13

TP53 Y234H

Does that help?

[joekaty in reply to Tall_Allen]

Oh and Tumor Burden Mutation TMB-Low; 2 muts/Mb

[Tall_Allen in reply to joekaty]

Thanks. I know I use a lot of abbreviations. Every clinical trial in the clinicaltrials.com database is assigned an NCT#. It's an easy way to look up clinical trials.

Thanks for the genomic breakdown. As you said, not a lot there that's really actionable. Most of those are common genomic alterations in tumors for which they currently have no specific treatments. Another patient wrote about a clinical trial (called "ICECAP") in the UK that he is considering in which they give ipatasertib and atezolizumab to block the P13k pathway in men who have PTEN loss :

healthunlocked.com/advanced...

I haven't found the NCT# for it, but you might wish to mention it to his oncologist. He may wish to contact Dr. de Bono at Royal Marsden to inquire about it.

[joekaty in reply to Tall_Allen]

Ok. Thanks Allen. As always appreciate both your knowledge and your time.