COMPOSE PRRT Lu Edotreotide Trial Study

Posted by ssf @ssf, Mar 12, 2023

Is there anyone out there that is considering or has been accepted to the COMPOSE PRRT Edotreotide Trial study?

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

lu7 | @lu7 | Mar 12, 2023

I am in this trial.

ssf | @ssf | Mar 16, 2023

In reply to @lu7 "I am in this trial." + (show)

Hello,
Thank you for responding, I am currently going through some imaging to determine if I will be a candidate. Can you tell me if you were selected for the trial medication or the best standard of care? How are you doing on the trial?
Thank you

lu7 | @lu7 | Mar 18, 2023

In reply to @ssf "Hello, Thank you for responding, I am currently going through some imaging to determine if I..." + (show)

I am getting the trial medication. I'm doing well. I get my third infusion on Tuesday. The post infusion protocol for radiation is kind of a hassle, but will be with it. I am fatigued for several days after treatment. I've had occasional nausea, but not bad. I didn't see a big downside to the study for me.

ssf | @ssf | Mar 19, 2023

With a little luck, I'll qualify for the trial. With the higher grade cancer (3) Ki67 42, I'm hopeful the trial med will have some lasting effect.
Thanks again
Sean

lu7 | @lu7 | Mar 20, 2023

Yes, that is my hope. I am getting treatment 3 tomorrow. Best wishes to you!

Teresa, Volunteer Mentor | @hopeful33250 | Mar 21, 2023

Hello @ssf and @lu7,

As I was not familiar with the study. I appreciate your bringing this clinical trial to Mayo Clinic Connect.

I did find some information on Mayo Clinic's website regarding the study. Here is the link to that information:
--Clinical Trials
https://www.mayo.edu/research/clinical-trials/cls-20532370

Did you both have PRRT treatment prior to being selected for this study or is this your first time being treated with PRRT?

ssf | @ssf | Mar 21, 2023

In reply to @hopeful33250 "Hello @ssf and @lu7, As I was not familiar with the study. I appreciate your bringing..." + (show)

I have not had PRRT, still waiting to see if I am accepted to the trial. If I am then I would receive either the trial medication or CAPTEM. To date, I have had only surgery and some Lanreotide injections.

lu7 | @lu7 | Mar 22, 2023

In reply to @hopeful33250 "Hello @ssf and @lu7, As I was not familiar with the study. I appreciate your bringing..." + (show)

The Trial was my first treatment. I didn't have any treatment post op. I had my 3rd treatment yesterday. No nausea. Some fatigue but not bad. Scans in May. I'm very hopeful.

Teresa, Volunteer Mentor | @hopeful33250 | Mar 22, 2023

In reply to @lu7 "The Trial was my first treatment. I didn't have any treatment post op. I had my..." + (show)

That is great, @lu7. I hope that your upcoming scans give you a good report.
Thanks for providing information about this clinical trial.

@ssf
When you find out if you have been accepted to the clinical trial, I would enjoy hearing from you and if you are comfortable doing so, please post your experiences as you go through the trial.

lu7 | @lu7 | May 4, 2023

I had a CT Scan this week to assess tumor status after three infusions in the COMPOSE trial. The marker tumors are smaller. My labs look great and I will get my 4th infusion in two weeks. Just wanted to update those interested in PRRT. @ssf, have you entered the trial?