1. < Neuroendocrine Tumors (NETs)
Profile picture for chaplaindan

2nd 3 month follow up

Posted by chaplaindan @chaplaindan, Oct 2 10:13am

My wife has well differentiated, grade 2 stage 4 NET to the terminal illeum (which was removed) w mets to the liver and pancreas - she just had her second post diagnosis scan after 6 months on lanreotide. She had been stable w/ no growth until her recent MRI which shows an increase in her Pancreas Tail from 1.3 x 1.7 cm to 1.6 x 1.9 cm, (an increase of 2 to 3 mm. Her Liver is still stable. We see Dr. Amr Mohamed, head of the neuroendocrine tumor program at UH Seidman Cancer. He stated that since her pancreatic tumors have only increased less than 20%, we will stay the Plan of care and consider PRRT if there is more increase in 3 months. Has anyone else experienced this type of minimal growth (experience) and possibly what to expect? Any advice? Comfort? I truly appreciate the input.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Profile picture for rkklinger
rkklinger | @rkklinger | Oct 3 11:08am

My husband has Stage 4 Nets with tumors throughout his skull and body. He had 1 tumor removed from between the Illium and Bowel in 1995. At that time there was no treatment. He was rediagnosed in December 2022. He has been on Lanriotide since early January 2023 and there has been stable with only 3 new tumors that are minimal in size. We will be at Mayo to see Dr. Haldanerson on Monday (10/6) for a 6 month scans. He lives a very normal life with a few issues with food digestion but all manageable.

REPLY
Profile picture for vinnie694
vinnie694 | @vinnie694 | Oct 5 7:53am

I also have stage 4 metastasized from small intestine to the liver. On Ocreotide injections for a little over 2 years and experienced slow growth of maybe 3 to 4 tumors out of 16. We discussed the next phase of my treatment plan which was a PRRT treatment (Lutathera) .. I was told there was no immediate urgency to make a decision
but to start thinking about it.. I am a decisive person, so after a day or 2 of researching, I decided to have the treatments. For me It was a good decision, after the 4 treatments, the tumors that were growing had decreased, and some of the smaller ones were not visible.. For me it was the right decision.. Hope this helps..

REPLY
Please sign in or register to post a reply.