Diagnosis of NEPC- Low PSA High Chromogranin A

[Daddysdaughter]

My father was diagnosed with mCRPC 6 months later after continuing ADT. Was found to have Neuroendocrine PCA per Dr. Kwon at Mayo. His reaction when looking at his scans when comparing them With previous scans were obvious that the PC had spread to more lymph nodes and existing ones have become much larger. He failed Xtandi (3mo absolutely no changes) and now was recommended to start Jevtana and carboplatin. He has so far had chemo #1. As I was doing some research Today I recall Dr.Kwan explaining that it does not have the “small cell pattern” but definitely looks like Neuroendocrine involvement. Everything I have read so far doesn’t seem to look promising even with chemo. I’m asking this community if anyone has had NEPC not small cell and has success with chemo. If not, what other treatments have you had access or trials to?

[softwaremom00]

We have NEPC. (My husband actually) I think we have the small cell variant. We did chemo and it helped a lot. The first chemo as Docetaxel and Carboplatinum. We finished this in October. We just finished strontium(Metastron) and Mitoxantrone(Novantrone). This was a chemo and radium type of treatment and it seems to have helped as well.. but we will find out for sure on Friday after the CT scan. Our doctor has also talked about a PD1 Inhibitor(Optivo) From what I have heard it seems like there are a lot of drugs/treatments for Neuroendocrine Lung Cancer.

I think Xofigo is better than Metastron but UNM would not start us on it.. It is their experiences with Neuroendocrine and Xofigo... if there is a flare up the Oncologists will add chemo to it and Nuclear Medicine does not like that..

From my limited research large cell Neuroendocrine prostate cancer is very rare. It is more rare than small cell Neuroendocrine Prostate Cancer. Do you think you have large cell NEPC ?

We are also taking Lupron and Zytiga.

Someone posted about a fellow on this forum with NEPC that lived 10 years.. Have hope!

I hope this helps. Tons of hugs and prayers!

[Daddysdaughter in reply to softwaremom00]

Quick question did you ever have him tested for NEPC? What test did they do? My father was told that he has NEPC and that he would benefit from a platinum chemo. So, i was never told that there was a “test” for NEPC as well as chomogranin stains on tissue. Apparently blood test of chromogranin are not reliable. Also he wasn’t never tested for small cell but our MO was thinking it might be since he has failed most treatments. How is your hubby doing? Wishing him well and you the strength!!

[softwaremom00 in reply to Daddysdaughter]

My husbands biopsy showed NEPC. The tissue sample was tested for it. If your Dad had a recent biopsy for prostate cancer.. then you can ask them to test the tissue sample. It is true that the NEPC cancer does not always raise chromogranin.. so my husband gets CT scans and bone scans.

Mayo Clinic and other places around the country have clinical trials for a drug/treatment on NEPC cancer that expresses or has a certain marker. We had my husbands tissue tested for this marker and his did not have it so we did not qualify but your Dad might. This is another reason why you should get a definite diagnosis.

My husbands latest scans were really good. They were from January.. .we get more next week. His most recent chromagranin score was good.. in the normal range. PSA is good. He looks and feels great and is in much better shape than he was a year ago. It has been great getting a break from chemo.

I am hoping for good scans next week.

How is your Dad ? Did he do the platinum chemo ? I hope you are both well. Sending you tons of hugs and prayers!

[Daddysdaughter in reply to softwaremom00]

My father has been doing well taking a break basically from all treatment except Lupron. His MO Believe that he was not really responding well to the chemo with PSA continuing to rise as well as bone Mets that are new. So she recommended that we get on a trial. We really don’t know at this point what my father has we do know that Xtandi did not work chemo only kept it mildly stable. He finally had a biopsy done and it showed MSI negative so he wouldn’t qualify for immunotherapy with insurance coverage but he might be able to get dual immunotherapy. The other possibility is a study being done at Cedar Sinai Medical Center for patients that have NEPC or possible small cell. They are testing for DLL3. This oncologist also sent all the testing for NEPC, tissue and heme chromagranin, and about six more other tissue and blood tests. We are just in waiting mode to see what the options will be depending on the results. He even mentioned possibly even trying Zytiga. Again we really don’t know until the results are back.

Wishing you and your husband well! Thank you again for all your responses they are so informative. Hugs and prayers to you as well!

[Hidden]

Neuroendocrine prostate cancer is rare on diagnosis, but the features of it can develop in 20-30% of men with CRPC (See Treatment Related Neuroendocrine Prostate Cancer). There are quite a few articles on this. Here's one below for reference. The Doctor in this interview has done quite a bit of work in this area. She indicates that Platinum- based chemos are generally the best approach. Many people get a good response to treatment. I wish the best for your dad, we are all pulling for him.

oncotherapynetwork.com/geni...

[Daddysdaughter in reply to Hidden]

We discussed with his MO platinum chemo. She is utilizing MD Anderson’s protocol for NEPC and chemo with Jevtana and Carboplatin. Thank you all for your ongoing support. I appreciate all the info since we have been learning more daily about treatment. I really appreciate it❤️

[Hidden in reply to Daddysdaughter]

Sound like his MO is on top of the best treatments. Hoping for the best outcome for him.

[Daddysdaughter in reply to Hidden]

Thank you 😊

[Daddysdaughter in reply to Hidden]

Wishing you all the best outcome of treatments you are enduring as well.

[Daddysdaughter in reply to Hidden]

After his second chemo his PSA went from 16.4 to 17.2 .. just a little increase. But.. his Chromogranin A went from 265 to 450. I’m so worried that chemo is not working. His MO said that there tends to be a flare in tumor markers especially with fast growing tumors. We will see what the results are in 2.5 weeks. Other then that chemo round 2 has been easier and less frightening then the 1st. The only Side effect was terrible constipation- and we will take that over any other side effect!! 😂