Neuroendocrine Differentiation

[Lagovista2018]

Hi my husband ( married Dec 7th this year) was diagnosed a month ago with stage 4 prostate cancer with metastasized to his bones. His oncologist stated that he had neuroendocrine differentiation cells that is very aggressive he goes to chemo Mon-Wed for every three weeks just has his 1st chemo treatment 2 weeks ago. Has or does anyone on here have the neuroendocrine differentiation with their stage 4? Or have heard of this? We head down to MD Anderson on the 26th of this month

[Blair77]

I believe some others here also have this type of cancer. Please ask your oncologist to explain how this cancer is different then your typical prostate cancer.

[Hidden]

To my knowledge, I don't have it but I can share what I know about it.

Prostate cancer can be a mixture of different types of cells, the most common of which are adenocarcinoma. Neuroendocrine differentiation means that a percentage of the cancer cells are neuroendocrine.

The neuroedocrine cells don't have androgen receptors so the standard treatment of depriving them of male hormones does not effect their ability to reproduce. This type of cancer is more likely to metastasize to the organs and soft tissue, whereas the more typical Adenocarcinoma more often goes to bone and lymph nodes.

In many men that are treated over long periods of time, cells with neuroendocrine characteristics will eventually develop (25-30%).

Chemotherapy is the most effective treatment for this type of cancer, usually a combination of Carboplatin and Etoposide or Cisplatin.

Your oncologist should be able to explain this.

[Lagovista2018 in reply to Hidden]

Your response was very helpful. My husband is on etoposide chemo therapy. His oncologist and urologist said the Mets are in the bones (especially back) his oncologist is a rockstar he said since it it aggressive we have to be aggressive in treating it

[Hidden in reply to Lagovista2018]

Is he also on ADT such as Lupron, Zolodex, etc and what kind of response did he get from that?

[Lagovista2018 in reply to Hidden]

He’s on Trelstar and casodex (hormone therapy) and carboplatin and etoposide (chemo treatment). My husband goes Monday-Wednesday every three weeks for chemo.

[Kimmilemo in reply to Hidden]

Thank you for the excellent description.

[GP24]

The FDA has approved a new treatment for neuroendocrine tumors this year, called PRRT. I am not sure if it is also approved for neuroendocrine prostate cancer already.

netrf.org/prrt-approved-by-...

cancer.gov/news-events/canc...

Here, on page 4 and 5 are articles about this treatment:

snmmi.files.cms-plus.com/Fi...

I would look into this treatment. From what I know, it is the most effective one for NETs.

[Lagovista2018]

Thank you very much- I sent these articles to my mother in law who is a nurse and my husband

[Tall_Allen]

For a mixed type, they often mix docetaxel and carboplatin. Here are some options:

pcnrv.blogspot.com/2016/12/...

[PetrK]

My father has neuroendocrine prostate cancer.

Dad had brachytherapy in 2009.

2017 - prostatectomy, July 2018 - cistectomy. Now he has metastases in lymph nodes and in ex-prostate area (((

2018 - chemo Carboplatin+Jevtana - no effect.

He take Olaparib because BRCA mutation, but it doesn’t help. He‘ll start chemo Etoposid+Cisplatin.

[Lagovista2018 in reply to PetrK]

My husband has Mets in the bones he’s on Trelstar and casodex hormone there’s and carboplatin and etoposide for chemo. His oncologist said since it’s aggressive (cancer because of the neuroendocrine cell) he has to be aggressive. Both my husband oncologist and urologist said that a prostatectomy is not necessary at this time due to my husband being 45yrs old and that there is so much medications for treating it

[PetrK]

How mucn is Ki67 your husband's? And what about somatostatin receptors?

See also facebook.com/groups/1570676...

facebook.com/groups/1920986...

ronnyallan.net/

[mcp1941]

My wife and I were also married on Dec. 7th (1968). We have been fighting PCa for 22 years. Primary treatment EBRT + Seeds. On HT three times for about a total of three years and now my MO believes I am changing over to NEPC. Will find out the next step when we see him in May. PSA 0.9 and rising, currently on Eligard and Erleada.

[Mohopes]

Sounds like your husband and mine are fighting the same beast, Lagovisita2018. We've messaged before--I am the one whose husband was diagnosed similar to yours about a month before and we'll be down at MD Anderson the same day as you, seeing the same dr. My husband hasn't officially been diagnosed with neuroendocrine differentiation cells, but I would bet on it. So far none of the anti-hormone treatment has worked; his local MO wants to start him on chemo, probably docataxyl (sp?) The beast is moving so fast that he's losing his ability to walk because of the horrible pain. It sounds like you've been given much more specific info. than we have since the get-go. We're hoping that we'll find some hope in Houston. We leave tomorrow morning. Maybe I'll see you there. I wish we could meet under better circumstances.

[Lagovista2018]

Yes we leave tomorrow morning. His appointment is Thursday and possibly Friday. My husband is on casodex hormone therapy daily and trelstar hormone injection every six month. He recently started chemo therapy he’s on carboplatin and etoposide chemo Mon-Wednesday every three weeks. His first chemo treatment was two weeks ago He little nausea, some fatigue, today he pulled out a clump of hair on top of his head and is starting to lose a little bit of taste. He had zero pain in fact, he doesn’t take much of his pain meds like he used to prior to diagnosis since starting treatment.

[Hidden in reply to Lagovista2018]

I was wondering what kind of PSA response he got from the Casodex and Trelstar injections. I know PSA is a less important indicator with neuroendocrine cells that don't produce it, but he probably also has hormone sensitive cancer that is responding to ADT. Could you share his PSA at diagnosis and what the PSA response was?

[Lagovista2018 in reply to Hidden]

His PSA was Gleason 9 at diagnosis. He just started chemo a couple weeks ago. Goes to his urologist on the 3rd of January and his next round of chemo on Jan 8th. We’re in Houston for the next few days at MD Anderson

[paulofaus]

Hi, I started out in April 2016 with Gleason 10 adenocarcinoma and was given ADT and chemo but within 2 years my cells morphed into the small cell neuroendocrine type. Since then I've had cyberknife radiation to the prostate and bladder wall as the cancer invaded my bladder. I've also had cisplatin etoposide but I had some lung nodules develop and I'm now on cabazitaxel. I'm still working full time, but I'm weary after 4 months of chemo. I'm looking at pembroluzimab and lutetium 177 docatoc next. I'm age 51 and living in Perth.

[Lagovista2018 in reply to paulofaus]

My husband a week before diagnoses had a small mass that was near his bladder which was why his prostate was enlarged and making it difficult for him to urinate. His urologist did a scope and was able to remove the mass which has made it easier for my husband to urinate this was done over a month ago and has not had any problems urinating since. We’ve been in Houston since yesterday at MD Anderson and was very impressed has made me even more hopeful than ever before

[elvismlv123]

Good Luck at MD Anderson with the best of outcomes.

you are not alone.You and your husband are in our prayers.

Dominick