Neuroendocrine Prostate Cancer mLiver c

[safari123]

Found out my ademo morphed to NEPC (neuroendocrine prostate cancer). Hard to get research information on why this happened or treatment options. Any info would be great . My MO hasnt treated before and seems astonished since psa was <.1 for over a year. Says very rarely diagnoised .

Thanks in advance

[skiingfiend]

You need to start following me, I'm literally 2 weeks ahead of you. Hopefully we can pool resources over the next little while.

start with these posts:

healthunlocked.com/advanced...

healthunlocked.com/advanced...

healthunlocked.com/advanced...

Here is some reading material:

hematologyandoncology.net/a...

ncbi.nlm.nih.gov/pmc/articl...

ascopubs.org/doi/10.1200/ED...

prostatecancer.news/2016/12...

Edit:

Now that I've seen you profile and post history you're actually 1-2 months ahead of me from a treatment perspective.

[dhccpa in reply to skiingfiend]

What percentage of cases morph into NE? Is it always at a later stage of being metastatic, and being on treatmen? If you know...Thanks

[skiingfiend in reply to dhccpa]

17-20%.

I think treatment emergent NE is typically part of a metastatic condition, but again it could possibly emerge from localized PCa after some time and then rapidly metastasize out of the prostate.

deNovo NEPC always starts in the prostate.

In my case I think it happened just prior to Castrate Resistance or in the transition period between Hormone Sensitive and Castrate Resistance. NEPC/SCCP is a resistance mechanism (RM) so by definition once you have it you are CR. So one question for me is - is NEPC/SCCP the only RM I have or one of 2 or more evolving RM's.

This is a quick read:

hematologyandoncology.net/a...

[skiingfiend]

Have you had a biopsy yet to confirm the diagnosis?

[safari123 in reply to skiingfiend]

Liver yes pathology “unknown” primary but biomarkers

suggest Pca . MO said doesnt matter at this point since treatmentis same “ disease control” Platinum duo

[Ahk1]

I am sorry to hear about your diagnosis. How it was diagnosed?

[safari123 in reply to Ahk1]

ER for chest & abdomen pain.caused by multiple P.E. spun off from Liver C diagnosed by Liver biopsy

[Tall_Allen]

Maybe get a consult with Rahul Aggarwal at UCSF.

[CharlieBC]

We are in the same boat. After 14 years of PCa, this past September I found a lump under my jaw next to a lymph node. It had morphed into NEPC. I posted on this. It is likely that after the years of androgen receptor pathway inhibitors- Zytiga, Xtandi, Erleada), I was one of the rare instances of it changing to NEPC. The following link gives a good description of the situation, and outcomes.

I posted about my journey if you want to look at my previous posts.

Good luck.

Charlie

researchgate.net/publicatio...

[Cyclingrealtor]

Any specific germline mutations?

[safari123 in reply to Cyclingrealtor]

MO says “none that there that there is currently Rx for