Not stable after 18 months past last PRRT treatment

@sophiarose I am really sorry to hear that the tumors in your liver and bones are growing. How did your doctor respond, when you said that you'd prefer PRRT and bland embolization? I am curious why he/she would be apprehensive to redo some things that already worked for you?

Embolization was one of the first treatments I had (pancreatic NET with liver metastasis). Don’t know if it helped or not, but I had high fever for several days after and didn’t eat anything. My doctors did not suggest a second embolization although initially that was proposed.
After PRRT (Lutathera) my condition progressed some months later and I had distal pancreatectomy and liver ablation. Currently I take Cabometyx (about a year) and am concerned about how long it will continue working.
I’m interested in more PRRT either Lutathera or alpha clinical trial (preferably the latter). I was turned down for a clinical trial based on prior Lutathera treatment, and was also told that Medicare approval for PRRT retreatment is difficult to get. But I’m not giving up.
PS Another reason I was not included in the trial was that my condition had not yet progressed on Cabometyx so I guess that’s good news. The drug does have several side effects that I didn’t get on PRRT.

@tomrennie
I just heard from my Dr he is receptive to doing another round of PRRT and some kind of Embolization
He isn’t sure if the pain I am having when I sit or bend is my live or the cancer on my rib cage
If it is my rib cage or can hopefully be zapped with radiation
Thank you for responding

@sophiarose That's good news you agree?

@sophiarose Interesting. During PRRT I had occasional back pain when getting up after sitting or kneeling. Usually worse later in the day. Doctors referred me to a physical therapy program that didn’t really fix the back issues but helped regain overall strength. The exercises I could easily do at home, but had to stop after the pancreatic surgery. Still have some pain and stiffness at the incision site and haven’t really resumed most exercises I was doing. (Many activities I can still do but no longer enjoy them as much).

The back pain was the only discomfort I had on PRRT and I would take it again over the effects I have had on Cabometyx (dizziness, fatigue, stomach and esophagus pain, gas, inability to eat many foods I used to like).