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