PRRT side effects and results

Hi gismole1 - I am happy to provide my experience. Dr. Ong at Swedish First Hill Hospital in Seattle worked on 5 tumors and one was necrotized and 3 others showed minimal growth. They could only work on a portion, so suggested I return for more of their procedure. This can be typical. The after effects were so minimal, a bit flu like for several days, my only concern was coming out of a 7 hr. general anesthetic. I was pleased, I will return as nothing else has slowed up the growth. I am currently on Lanreotide which helps with symptoms. Best of luck!

So sorry to hear of your experience. I also had 2 PRRT, but my Radiologist suggested I stop after finding that the tumors were growing exponentially. I then found Histotripy (online) and went that route. It helped and hopefully is the answer as it was non-invasive and destroyed a lot of the tumors (parts of them). Mine were a bit larger than the fully necrotizing types.

Any update on your histotripsey treatments?

Read my comment to gismole1. I will be going back next onto for more histotripsy
Will report later after ct scan results. Unfortunately with this cancer, there are not quick results. 🥹

Hello @sophiarose

You posted about a week ago about the swelling in your arm following your fourth PRRT treatment. Has the swelling lessened yet?

Yes the swelling is going down
Still painful
They scanned my arm and body to make sure no radiation residue was in my arm
They said all was ok and it will take time for my arm get better
Thank you for asking

I appreciate your reply, @sophiarose. I'm glad that it is improving,

@sophiarose: I am awaiting my 4th PRRT early December 2024. How is your affected arm? What explanation did they give you after this experience? I, like you, are hoping for tumor elimination or severe shrinkage; however, we must wait until 4-6 weeks after completion of the session to get a scan. My team mentioned getting a CT scan, but I have read that an MRI with Eovist contrast would show size of tumors better. I have NET small intestine primary with progression and liver metastasis (3 tumors) grade1; stage4. Has your team specified when to get scan and/or which scan to get that will show what PRRT has done for you? Thanks…

First I wish you all the best!
They actually gave me no reason why my arm blew up all they said after the scan results were back was it will in time be ok just keep icing
The swelling has gotten better still not 100%
Yes the MRI does show size the PET scan shows progression
If in the past you have gotten MRIs I would continue with that because they will have something to compare with
I am getting my MRI 8 weeks after my last treatment and PET scan 10 weeks after
I have been told that the treatment causes inflammation so even though the tumors may seem bigger they might not be and that could take months for the inflammation to go away
I have learned a lot through all of this
Do all the research be strong and never forget it is your body
Good luck

Just here to share my story and hopefully help others. I was diagnosed at 57 with stage 4 Grade 2/3 Pancreatic NETS that had metastasized to my liver and lymph nodes in the area. I had about 20 tumors in my liver but the Cancer had not spread anywhere else. One of the Liver lesions was 4x7cm. I did a 5 month course of Lanreotide but I think that was a waste of time... my Cancer continued to Progress. Fortunately I live near Portland, Oregon and the OHSU Medical Center. I was incredibly lucky to qualify for a Phase 2 Clinical Trial sponsored by a German Entity going on at OHSU. Here is a link for more info and the website says they are still recruiting. Furthermore, this same Clinical Trial is being performed at other Medical Centers throughout the country... there's a list on the OHSU website. I was informed i'm not allowed to post the Url/link on here but search OHSU Clinical Trials, Hit the box that says "Interested in Clinical Trials" and then type in PRRT.
The Trial is specifically for those with GNETs and PNET's. I then got extremely lucky through randomization which is how they divide those in the trial: You're either randomized to receive PRRT - LUT-77 or the Standard Method of Care which i believe is Captem. (Chemotherapy). I just completed my 3rd treatment. My first 2 treatments I had no side effects accept just a little tired. Blood work and Kidney Function looked good after 2 treatments. 2 weeks after my second treatment I had Scan performed and my Oncologist told me I was responding,.. almost 25% of my Cancer had reduced and my tumors were shrinking. That's only after 2 treatments 1 year after being diagnosed. I just finished my 3rd treatment and besides a little diarrhea and fatigue for a few days I feel good. Next scans in mid-June so hoping it continues to work and doesn't metastasize. They say if you respond after 2 or 3 treatments then there's a very good chance it's going to turn out well. This clinical trial gives 6 PRRT Treatments instead of 4 so there is risk involved but it could make a big difference. I'm very cognizant however that anything can change at anytime. Don't spend your time reading about Case Study Results online. It won't serve you well. The personal accounts in this forum is great; but in general i would avoid reading about survival rates, etc. ... everyone responds very different. I'm new on this forum so i'll check in regularly and feel free to reply if you have any comments, suggestions, or questions.