Neuroendocrine prostate cancer

[Alf2524]

My father was diagnosed with a neuroendocrine tumor. It recently metastasized to lungs, liver, and pancreas. PSA is undetectable. Testosterone is 41. He is currently on Keytruda 6th round with no luck. Any advise? Should testosterone be addressed?

[Tall_Allen]

Here are some clinical trials he can look into:

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

If he is positive for somatostatin receptors he can try the Lu-177-DOTATATE, which is FDA- approved for use in neuroendocrine cancers of the digestive tract. But your oncologist might be able to make a case with your insurance company if he tries.

[Alf2524 in reply to Tall_Allen]

Thank you! I will check into the Lu-177

[Tall_Allen in reply to Alf2524]

Be sure you call it Lutathera.

[Alf2524 in reply to Tall_Allen]

I called excel diagnostics in Houston today. My father will have a GA-68 PET scan done. Hopefully he has the receptors so he qualifies for treatment.

[Tall_Allen in reply to Alf2524]

I think that was an understandable mistake. I don't think Excel diagnostics has Lutathera, which is Lu-177-DOTATATE and NOT Lu-177-PSMA. If he has neuroendocrine PC, the Lu-177-PSMA they offer will be very useless and a waste of a LOT of money. Lu-177 is only the radioemitter thatt they attach to different LIGANDS depending on what they want the radiation to attack. Neuroendocrine PC doesn't have PSMA on its surface so PSMA ligands are useless for it. It may have a somatostatin protein that the DOTATATE ligand can attach to. Even if he shows some positive Ga-68-PSMA tumors, Lu-177-PSMA therapy will not help him very much. Please re-read the article I linked to to help you understand this better. People on this site throw around terminology haphazardly.

[Alf2524 in reply to Tall_Allen]

I was told that it was just approved and I just signed a consent for Lutathera.

[Tall_Allen in reply to Alf2524]

Why are you going through Excel diagnostics for Lutathera? I thought they were running a clinical trial for Lu-177-PSMA. I guess they supply Lu-177-DOTATE as well. So they will be using a Ga-68-DOTATATE PET on him first? Great to hear your insurance approved Lutathera for him!

[Alf2524 in reply to Tall_Allen]

Excel is only 4 hours from where we live. Yes they said GA-58 donate pet first to see if he has the correct receptors.

[Tall_Allen in reply to Alf2524]

Fantastatic! Let me know how it goes.

[Alf2524 in reply to Tall_Allen]

Will do!!! Thank you for your help!

[Alf2524 in reply to Tall_Allen]

GA-68 scan completed on Friday. Now we wait to see results. I was originally told Medicare would cover the scan and treatment and then when we arrived in Houston we were told they would not. $5,000 for the scan. I was also told the price of treatment is now $60,000 per injection??? Is that correct?

[Tall_Allen in reply to Alf2524]

I was surprised your insurance covered your scan or Lutathera. The mfr announced that 4 doses would cost $190,000. This is an "off label" use for both the scan and the drug.

[Alf2524 in reply to Tall_Allen]

Hi we did receive the results and it looks like he does have intense somatostatin receptors in the pancreas. He has subtle receptors in prostate gland and other areas. I am trying to contact someone in Germany now. I believe it is $16,000 per treatment there versus $62,000 per treatment in the United States.

[Tall_Allen in reply to Alf2524]

If he has intense neuroendocrine receptors in the pancreas (are you sure this is primary prostate cancer?), he can qualify for Lutathera paid for by insurance/Medicare. It is FDA-approved for NE cancers of the digestive tract. After you get out of the donut hole on co-pays for drugs, it will be free - a LOT less expensive than going to Germany.

[softwaremom00]

My husband has neuroendocrine prostate cancer. A year ago he started and finished chemo and was on Zytiga and Lupron(Still is on Zytiga and Lupron).(He also went through a mini-Chemo while on strontium shortly afterwards to mop up remaining cancer cells.

According to one of our Oncologists, chemo is still one of the best first line treatments for Neuroendocrine Cancer. I don't think Testosterone matters. I can post more about his chemo treatment, if you are interested. Chromogranin score is a marker that sometimes helps with Neuroendocrine.. but not always. Has your Dad gone through chemo yet ?

lots of hugs and prayers.

Softwaremom

[Alf2524]

Hi I applied through compassionate care at Merck for the Keytruda. We received it free for 1 year. Unfortunately it did not work. His cancer is progressing. I’m looking into possible PRRT at this point. Thanks for your reply.

[Alf2524]

Thank you!!!

[Alf2524]

Thank you! He did not respond to 5 rounds of Chemo.