1. < Neuroendocrine Tumors (NETs)

Y90

Posted by laree @laree, 2 days ago

Pnets KI67 25%. My husband had 3 captems cycles. The last cycle had toxicity and became sick. Anyone experience Y90 procedure for Pnets mets to the liver? I have read many net patients use Captem to shrink tumors for a few cycles. Not sure why the Dr wants to dive into Y90 already. Unless it is because my husband got sick the last cycle of Captem. But didn't use anti nausea meds either, unfortunately. Anyone have good results with Y90 and was successful?

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

laree | @laree | 15 hours ago
In reply to @kevinmonroemi "I have a 4.5 cm tumor in the head of the pancreas and an atrophied tail..." + (show)
@kevinmonroemi

I have a 4.5 cm tumor in the head of the pancreas and an atrophied tail as well no surgery was suggested pancreas function is good as is the liver. However I do have functioning tumors (gastrinomas). I was told my pancreatic tumor is slower growing that’s why it wasn’t treated as aggressively. I think liver tumors grow faster because of blood supply does anyone know if that’s true?

Jump to this post

Are you you using anything to keep the tumors stable after Y90? Thanks so much.

REPLY
1 reply
kevinmonroemi | @kevinmonroemi | 13 hours ago
In reply to @laree "Are you you using anything to keep the tumors stable after Y90? Thanks so much." + (show)
@laree

Are you you using anything to keep the tumors stable after Y90? Thanks so much.

Jump to this post

Not at this time only get lanreotide. Next scan in September Dr said I will go on a new treatment when tumors start to grow again

REPLY
lu7 | @lu7 | 13 hours ago

I have 20 to 30 Mets to the liver. Have done PRRT, lanriotide, and captem. All worked for awhile. My scan in April showed all tumors stable or shrinking except 2 or 3. One was actually growing. They used y90 in the largest tumor and the result was very successful. I didn't get sick at all and the procedure was very tolerable. I do have significant fatigue. I remain on captem. If all looks stable after a year of captem, I may get a chemo break for a few months. Yea!

REPLY
lindabees | @lindabees | 7 hours ago
In reply to @laree "Yes, we are seeing the only net specialist in town at UCSD. The Dr. said no..." + (show)
@laree

Yes, we are seeing the only net specialist in town at UCSD. The Dr. said no surgery for the pancreas. However, I don't why. Or of he meant not right now. I feel like they only give you bits of information at a time. Like not to overwhelm you. But we have a high schooler at home to enjoy as much as possible. I like to know what might be ahead of us.

Jump to this post

I totally sympathize with your situation. Its frustrating to not have the answers you need. But it is important for you to understand what is being recommended or not recommended so you need to ask these questions and insist on an answer.
Also, it's very important to educate yourself as much as possible so that you feel comfortable if what the doctors - even a specialist- tells you makes sense or not. Had we relied on a top net specialists opinion of no options for my husband 17 years ago he would not be alive today.
Fortunately there are many net specialists in California. That is where my husband's journey began and we saw many of them. A second opinion may be helpful for you. Cedar Sinai in LA has an excellent net team and an excellent net surgeon, Nicholas Nissen. Other great options are City of Hope, UCLA and Stanford.
Many years ago a well renowned net surgeon referred to surgery and liver directed therapies like y90 in this way. You're Cinderella and it's 11:55 pm. You tackle what you can of the tumors and you've set the clock back to 7 pm.

REPLY
View MoreView Less
Please sign in or register to post a reply.