Update

[Believeit]

Hi all.

Unfortunately after 3 additional rounds of Carboplatin and Etoposide chemo has failed and the cancer is growing both in Martins Liver and his bones. We have a meeting with his MO this evening. Not sure if there is anything left to try.

Have been checking out clinical trials etc but if anyone has any advice or been in this situation, please let me know.

Thanks for all the help so far.

Nancy.

[God_Loves_Me]

It is my personal opinion

Do you have access to any clinical trial that focus on "neurodocerine" ? Please find out best clinical trials that focus on neurodocerine and share with MO. May be doctor refer you for clinical trials.

[Believeit in reply to God_Loves_Me]

Thanks for your reply. Yes, Clinical Trials seem to be our best option. We will speak to the consultant and see if he can guide us. Thank you.

[God_Loves_Me in reply to Believeit]

Here is the promising clinical trials,

healthunlocked.com/advanced...

try to get access to

- AMG 509

- ADC that focus on neurodocerine

Tall_Allen - I think you shared one clinical trials that focus on neurodocerine. I spent couple of min but did not find that comments. Do you have that name handy ?

[MJCA]

Hi,

I read Martin’s history. Both of you have gone through a lot in a short time. I don’t know if his cancer is sensitive to LU-177 (what is used in a PSMA-PET scan). If there is sensitivity, you may wish to inquire about the possible efficacy of Pluvicto. Best of luck. We’re all here for you.

[Believeit in reply to MJCA]

Thanks for your reply. Unfortunately pluvicto is not an option. If Martin had only bones affected it would but as he has neuroendocrine type in his liver it is “discordant”. I don’t fully understand it but I believe it won’t help. I think clinical trials are our only hope. Thanks for your kind words.

[MJCA in reply to Believeit]

Of course. I think I know what you’re talking about. I know my cancer is adenocarcinoma and Martin’s liver cancer is neuroendocrine which is not responsive to Pluvicto. I wish you the best.

[NickJoy]

I am sorry to hear about this new situation. I came across this trial but I don't know if it is relevant to NEPC - it is being run in Belfast but hopefully there are reciprocal arrangements across the border for health treatments.

clinicaltrials.gov/study/NC...

[Believeit in reply to NickJoy]

Thank you so much for looking this up and sending on the link. We really appreciate all the information we can get.

[Tall_Allen]

Here are some experimental trials:

prostatecancer.news/2016/12...

[Believeit in reply to Tall_Allen]

Thank you Tall_Allen.

I really appreciate this.

[ashvinparekh]

Has

[ashvinparekh]

You can inquire with your MO if LU PSMA (PLUVICTO)!therapy will work. I am told that it works well on mCRPC if results will be better if the cells are PSMA Avid. Wish you good luck.

[Maxone73]

I would suggest to look into other radioligands ( Actinium and Copper) especially the last one is being used in this trial (1/2a SECuRE trial NCT04868604) with great results.

urologytimes.com/view/multi...

Any mutation?

[Maxone73]

Check also this post, it's a summary:

healthunlocked.com/advanced...

[Maxone73]

globenewswire.com/news-rele...

[Roxysdad]

Just heard there is something new called CAR T ….From City Of Hope….Anyone on the forum heard of it?…..I have not researched it…..

[Happy1985 in reply to Roxysdad]

my husband has started car t trial. Infusion is planned for mid July. He is 1st to start this trial here. It’s pretty intensive but hoping for best.

[Roxysdad in reply to Happy1985]

Good luck!…keep us in the loop 🙏

[Happy1985 in reply to Roxysdad]

Will do . Thank you!

[Believeit in reply to Roxysdad]

Thank you for that information. I will check it out.