PRRT side effects and results

Hoping your wife is continuing to do well. My husband has struggled a bit coming back from his 4th treatment but I think he is finally starting to feel better. Scans showed shrinkage in most of his tumors but a slight increase in just a couple. Any increase at all was a dissappointment but hoping he stays stable going forward. His sugars and very good so that’s a good indicator of stability for insulinoma. He continues with octreotide infusions every month and will have new scans in November.

I just finished my third which they held off for 3 weeks to do MRIs of my brain and cervical spine to see if the cancer metastasized to the area
Thank God it didn’t
I was told that the PRRT causes inflammation and could make tumors look larger and they aren’t
I am so happy for your husband that it is over and more good news than bad
I wish you the best going forward
Best wishes

Thank you! I hadn’t heard that the PRRT causes inflammation and could make tumors look larger. That is good news. He is continuing to have some abdominal pain so will reach out to his team today.

After my 2nd PRRT I had a MRI with contrast of my head and spine the only thing that showed is a stenosis of the C2/3
However the PET scan showed a new area of metastasized NET in the C2
I did my 3rd PRRT
I will get my 4th on 10/9
Has anyone had metastatic NET of the spine? How was it treated?
It has now metastasized to my C,T&L
Thank you everyone for your support

Yes. I have had 4 treatments of PRRT. I get a quarterly infusion of Zometa. This is to strengthen the bone. Side effects for a short period is my bones seem to ache.

Thank you all for your input of PRRT experiences. 10/1 I receive 3rd infusion of Lutathera treatment for my Small bowel/stomach NET with liver met. Y’all have helped me mentally prepare for a successful treatment run. It is hard for us to wait 6-8 months to get scan results.
I spend moments visualizing tumor shrinkage and a few tumors “blowing up”… Time will tell. Best for all!

Zometa infusion… I would love to know if this is a common treatment following PRRT? How, Why and the reasoning behind this follow-up treatment? Could it prevent reoccurrence or progression of tumor growth?
All thoughts and info is much appreciated!

The oncologist feels that the Zometa will strengthen the areas in my spine and pelvis. One Doctor wanted to administer it monthly along with my monthly Lanreotide. I went with the Quarterly dose as another doctor had recommended. I still do monthly Lanreotide.
My next scan is December. The PRRT was successful in reducing the size of tumors in my Liver and about a 50% reduction in the Lung tumor.
We are all on a journey for sure. November will be two years for me.

@gesmone1: The anxiety accompanying the anticipation of treatment and resulting scans is so difficult for everyone of us.
I would like to suggest LACNETS support group- we meet via Zoom weekly and it has proven a great source of specific info, peer experiences and avenue of experts.
Check it out and see if may help you find your way down this twisty road.

Thank you.