Living with Neuroendocrine NETS, any advice?
Hi I am new here and just want to have a good place to chat with people that share my thoughts and concerns about my experience
Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
Hi pavlina60
I just contacted my Oncologist and she said the bloodwork would show if we might have a weakness to have gallstones. I would not assign Lanreotide as the main culprit. There are other tests as well.
@tomrennie: Yippee! What a great post that encourages every one of us diagnosed with NETS! CAP-TEM treatment cycles (Lucky 13) followed by Capecitabine as maintenance treatment sure proved to be exactly what your NET tumors needed! I have new respect for this chemo procedure. Thank you for sharing your experience. Enjoy each day! Hugs….
My pancreas had an 8x6cm tumor. My liver also had innumerable lesions with the largest being 8x6cm. There were traces of the cancer throughout my body mostly in my bones. I started captem. It took a few cycles but everything started shrinking. After 13 cycles, my pancreas and liver were working again, so I was switched to a lower dose of maintenance capecitabine. After 1.5 years of just capecitabine, everything is still stable. Keep the faith. There is hope.
@tomrennie
How big were your tumors? On liver?
TYou
@tomrennie
Thank you for sharing. What stage Pnets to tbe liver or grade did you have? It gives me some hope! My husband is KI67 25% so considered stage 3 nets. He is soon going to start Captem and I don't know the next steps yet. I hope he tolerates it well because he is sensitive to most medications.
Thank you.
Pnets to most lesions to the liver.
I am waiting for PRRT to be offered in my city, fingers crossed!
Yes, they remove the gallbladder because if you get on Lanreotidd treatment ( as I am) it damages (forms gallstones) the gallbladder, so they remove it at the same time.
I had the same - open surgery, also with hysterectomy as it was unrelated to NET, but discovered during my first DG PET scan. And I am still around - on March 10 will be " celebrating' my 2nd Lan treatment anniversary :). We zebras are a strong bunch!💜🦓
I am so glad that you are feeling positive, @cindypat1. You seem confident with the surgery that has been planned. I look forward to hearing from you again with any questions. Of course, I look forward to hearing about your post-surgery recovery.
Wishing you success with your surgery. Please keep us updated! Excited for you!
Oops! They will also remove the gall bladder.