PRRT Question

PRRT Update:
Today I got the absolute best news😁 Had my PRRT follow-up appt with the Radiologists. After reviewing both of my surgery path reports & all scans, all Drs agree the one small spot in lower colon/vaginal cuff is too small to treat right now. But if/when it grows I’ve been screened & can go immediately to PRRT treatment. So happy the NETS specialists & radiologists all agree! I will continue to have scans every 3-6 months (MRI, CT, PET) blood work & continue monthly Octreotide injections. Best news I’ve had since being diagnosed in 2022! Feeling so blessed!

Thank you!

That is so awesome. Yaaaay for you. Having a good doc team really helps. But most importantly, you put in the work. Through the surgeries, the injections, the discomfort, the pain, the homework, the decision making, and the mental and emotional trauma that comes with all of that, you persevered. That takes unbelievable courage. You should be proud of yourself. So many patients want the pot of gold at the end of the rainbow without doing what they can to survive the storm. I know because I recently lost an old friend who was unwilling to do so. Enjoy your pot of gold. You earned it.

Thank you! You are absolutely correct. You have to remain positive & forge ahead! I’ve never let this disease hold me back, I continue to do all activities I’ve always enjoyed albeit a little slower😊. I figure the worst is behind me so anything that pops later I’ll be handle. My biggest wish is that everyone diagnosed with NETS is one day stable & able to enjoy life!

How have you been feeling?

Great!

For those of you interested in learning more about PRRT, you might find this webinar interesting. Here are the details as well as the link.

The field of PRRT (Peptide Receptor Radionuclide Therapy) is evolving rapidly, and patients are hearing more about new developments like alpha therapies, the recent NETTER-2 and COMPETE trial results, and other advances. Join medical oncologist Dr. Udhayvir Singh Grewal from the Winship Cancer Institute of Emory University as he breaks down what these changes mean for people living with neuroendocrine cancer. This webinar will help patients and caregivers make sense of emerging research and therapies—and what they may mean for the future of NET treatment. If you are not available to view it "Live" it will be available on the YouTuber channel.

Hi if anyone know how far you have to say away from people after the radiation from the prrt?? Thanks kurt

My Advice
Read up on picc lines before you make any decision
My veins are sooo bad
I did PRRT and choose to not do a picc line and by the last treatment they struggled to find 2 veins to hook me up
What I didn’t realize is that you not only are subjected to be hooked up to 2 lines every treatment you have to get blood tests every 2 weeks
They say your veins flatten I think they just disappear
The blood tests did get extended as long as the results remained good
Good luck
I am stable for 11 months now

It all depends on who you come in contact with with
Pregnant and old people and children you should stay away longer
In general 3 days I did 1 week