Updating about My Lanreotide Injections & CT Scan

@pavlina60 You have no idea how much your encouragement and monitoring of my health means to me! Your experience and willingness to share with the rest of us are over & above!! 🤗🦓😍

Hugs to you, nana120! You are strong! You can beat this! Stay positive!
Stay hydrated and well nourished, so you have strength! 💜🦓

Your case sounds almost like mine. My lung tumor is rarely mentioned & the focus seems to be on my liver tumor. Additionally, I have a growth in the thigh muscle that has yet to have a biopsy & may or may not be a NET.

My “next step” is that my NET oncologist started me on Temozolomide this week 5 days at a time every 4 weeks. Most people here refer to cap/tem & I’m only on the one medication plus an anti nausea prior to each 240 mg dose. He will do blood work frequently & another scan in 3-4 months. Two days in so far only extremely exhausted & joints ache, but feeling OK otherwise. Zebras are tough folks! Hang on everyone ‼️

After a year on Octreotide 2 of my 16 Tumors showed some growth, ( No New Tumors)the Dr. moved my next MRI up a month and we will discuss what the next step will be..
Never lose Hope.

I had the Y90 In August of 2022 at University of Michigan as a follow up to 7 months of Captem that did not shrink my tumors. Just had my 35th Lanreotide injection also. I have about 30 tumors that desperately needed shrinking as I have functioning tumors (gastrinomas) they were causing a lot of problems treatment itself wasn’t too bad they did right side of liver then 30 days later the left. I did have a good response some tumors were killed and most of the others had reduction been stable for about 20 months. Going on a new treatment as soon as progression begins probably soon as this treatment only lasts so long. It is a high dose radiation with possible side effects

The Y 90 treatment was to my husband‘s liver, 1/2 at a time, after a mapping procedure using dye only to see if his body tolerated it. It is a procedure done through the groin feeding microscopic beads filled with radiation to kill the tumors in my husband‘s liver. It has been around for many years as one Mayo clinic NETS member said he had it done 13 years ago. Results, take about three months to show up on a scan. It doesn’t always work but we are hopeful. Good luck to you.

What is the Y 90 treatment? I also have had good results with the Lanreotide plus the Capecitabine & Temozolomide treatment but now after 5 years there’s concern about bone marrow loss so I just took my last chemo cycle and will remain on the Lanreotide only. Cat scans will determine next steps & PRRT is possibly the next. Having concerns about radiation. Lots of new treatments are coming out recently. Any thoughts appreciated

Yeah insurance is terrible everywhere. I met my out of pocket max on my first visit of the year which is 6800. Then there’s the fees you have to fight which are hidden. The healthcare provider negotiates a price insurance provider and they pass the cost on to us the consumer. We then have to fight thru a third party who lowers or gets the amount thrown out. It’s really ridiculous how all of this gets passed on to us.

@michaelv I may not have made my post clear. I did have the contrast, but I had to pay out of pocket for it.