What next after chemo, neuroendocrine... - Advanced Prostate...

Advanced Prostate Cancer

21,020 members26,200 posts

What next after chemo, neuroendocrine cancer

Neuroendo profile image
14 Replies

Neuroendocrine prostate cancer treatment

Gleason 9, 4+5, prostate cancer diagnosed in 2012. Prostate and 10 lymph glands removed in January, 2013.prostate cancer found in 1 lymph gland. Rising PSA in May, 20. Scans showed bone metastasis so started Lupron. February, 20, 2017 casodex added. Casodex failed in June, 2020. Started Xtandi in July, 2020. December, 2020 showed new bone metastasis and growth of existing metastasis. Tumor biopsy confirmed neuroendocrine cancer. Chemo with cabazitaxil and carboplatin January, 2021 through April, 2021. April scans showed many new bone metastasis. Started Xofigo in early May. My question is, what next after xofigo?

Genetic testing indicates lutetium not likely to be successful.

Written by
Neuroendo profile image
Neuroendo
To view profiles and participate in discussions please or .
Read more about...
14 Replies
Shooter1 profile image
Shooter1

Nalakrats--Always looking for your posts for good info. Look at a lot of your old replies and skim for stuff that is appropriate for me. Thanks for your effort.

Tall_Allen profile image
Tall_Allen

You may find this helpful:

prostatecancer.news/2016/12...

Try to get a second opinion from Misha Beltran at Dana-Farber. She's a top specialist in NEPC.

There are two different drugs that use Lu-177. One, Lutathera, is specifically for neuroendocrine PC that expresses somatostatin. But unfortunately, somatostatin expression with NEPC is typically low. The other, Lu-177-PSMA-617 relies on a protein, PSMA, that is unfortunately not expressed by NEPC.

There are a number of proteins that are expressed strongly by NEPC, and these have become the focus of attention. One, DLL3, is expressed by about half of NEPC. You might want to ask your oncologist to send a tumor tissue biopsy sample to the Wang Lab at Duke. They have an array of (IHC) antibody stains that can identify certain proteins expressed by your NEPC.

Rahul Aggarwal at UCSF is running a clinical trial of ZEN-3694, for patients that express that overexpress the MYC gene:

clinicaltrials.gov/ct2/show...

For patients that overexpress DLL3, there is a BiTE trial that enlists T-cells against DLL3:

clinicaltrials.gov/ct2/show...

There will be a similar immunotherapy trial specifically for NEPC starting soon:

clinicaltrials.gov/ct2/show...

There are several immunotherapy trials of checkpoint inhibitors beecause NEPC usually express PD-L1. They are listed at the end of my article above.

Neuroendo profile image
Neuroendo in reply to Tall_Allen

That is an informative article. I think the second opinion from Dr. Beltran is a good idea, as well as sending a tissue sample to the Duke lab. Thank you for your response; it gives me hope.

Spyder54 profile image
Spyder54 in reply to Neuroendo

Ask, and you shall receive. Tall Allen and Nalakrats, and Cesces guiding you in a hopeful direction. How good is Health Unlocked?Your optimism will keep yo going. Your Warrior Spirit is alive.

Best of luck, please keep us posted,

Mike K

St Pete

cesces profile image
cesces in reply to Tall_Allen

Tall Allen, is that new linac machine you mentioned last week of any relevance to this situation?

What about BAT therapy?

Neuroendo profile image
Neuroendo

Thanks. My oncologist did not think lutetium would help. He may not be correct. I have several months of radium 223 left to take so I don’t think you have to work to fast on my account.

cesces profile image
cesces in reply to Neuroendo

With neuroendocrine prostate cancer it is critically important to expedite your decision making cycle.

Every week counts.

You should mimic Nalakrats sense of urgency. It's there for a reason.

And also pay close attention to Tall Allen's recommendations.

I would start by organizing your life around scheduling the very very earliest possible appointment with Misha Beltran at Dana-Farber, even if you have to turn your life around to do that.

I would do that first thing in the morning and have an appointment made before the end of the day... Taking the earliest least convenient time slot available.

This type of prostate cancer is the medical equivalent of the blitzkrieg, and you are France. No time to dawdle.

Neuroendo profile image
Neuroendo in reply to cesces

Waiting for Dana Farmer to return my call

cesces profile image
cesces in reply to Neuroendo

Yeah, they are never in a hurry, are they.

Tall_Allen profile image
Tall_Allen

No-neither is of any use. Too many metastases to irradiate, and no androgen receptor, so BAT is useless.

MateoBeach profile image
MateoBeach in reply to Tall_Allen

Curious if any crossover efficacy of chemotherapy for GI and other neuroendocrine carcinomas such as streptozocin based regimens for NEPC?

Tall_Allen profile image
Tall_Allen in reply to MateoBeach

I haven't heard of it being used for NEPC, but Tom67inMA said he was having a terrific response to a FOLFIRI regimen.

Neuroendo profile image
Neuroendo in reply to Tall_Allen

I saw his post showing him snow blowing his driveway. I noted that folfiri was working for him. I have a call in to schedule with Misha Beltran

Crystalf2000 profile image
Crystalf2000

Cancer clinic in Tijuana Mexico. Natural approach. It works. My brother was there a few years ago, and he Is doing well. Dr.Castillo said prostate cancer is the easiest to cure. Its worth looking into.

You may also like...

What next after chemo fails

aggressive prostate cancer in 2011 with lymph node involvement. PSA 14, Gleason 10, Started 3...

What next after chemo?

and xtandi and then zytiga. I began chemo in June with docetaxil and carboplatin. PSA at start of...

Xtandi alongside chemo for neuroendocrine cancer?

taking his xtandi for the original cancer while getting chemo for the neuroendocrine cancer? Or...

Cancer Recurrence After Radiation/Chemo

a bone scan revealed a cancerous spinal lesion, which was radiated with five treatments in April,...

Advanced prostate cancer:- After Chemo, Bicalutamide also stopped working. What could be our next step?

was diagnosed with Advanced Prostate Cancer with multiple meds in bones and spine. PSA at that time...