Started PRRT treatment: Anyone experience tumor markers increasing?

I live in Canada, wheee they don’t do this test. I was meant to start round #1 of PRRT but it was delayed until March 10th because I got really sick: terrible timing, as I’ve been fighting for many years to get this treatment.

Sorry you got sick! But happy to hear you are finally going to get the PRRT. I can’t imagine having to wait that long. I was diagnosed in May 2021 with Pancreatic primary grade 2 stage 4. Good luck with the treatment!

The CgA is a nice to know test but not a need to know test. I believe researchers are trying to figure out the correlation of the test with nets and the actual best use for it. More emphasis will be placed on your next mri probably after the 2nd dose and definitely after round 4. Good luck.

Thank you for your helpful response

@kaiulani
Sorry to hear you were sick and this caused a delay. I wish you all the best as we journey down this path

My CgA was above normal before I started Lutathera. A month after the first infusion, it dropped to well within the normal range. A month after my second infusion, it was back in the abnormal range higher than it had been before starting Lutathera. My oncologist mentioned the same as yours did. The last infusion was November of '23 and, since then, the 9 of the 11 CgA screenings have been within or well within the normal range with the two that were above normal being just barely above. I'd take your onc's advice and try to relax. No one CgA test is definitive ... it's only the trend line that has any real significance and that's going to take several tests at least to establish.

Thanks Frankwc that’s good to hear - appreciate your response

rhb18
Patients with NET's are compared to zebras for a good reason.
After completing 4 PRRT sessions, my wife's blood tests demonstrated a ~50 % reduction in serotonin and Chromogranin A levels. I do understand that these markers are not used for definitive treatment decisions, however, we believe for certain patients they can provide some evidence of treatment efficacy.
Hope your next treatments show expected decreases.

@markmark007
Hello - I agree the more markers that show a decrease the better, however I did not know that PRRT can cause a seretonin decrease too. That is good to know so thank you

Hi, my wife will be meeting with the doctor tomorrow regarding NETS metastasizing in the small intestine area. It may require surgery. Has anyone gone through this procedure before? What are the expectations?
I have been able to keep my wife to embrace the present moment. ( Gratitude and Thankfulness). Presently, she has been feeding off my positive energy.
I'm reaching out for additional optimistic feedback, please.
Thanks-:)