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Living with Neuroendocrine NETS, any advice?
Neuroendocrine Tumors (NETs) | Last Active: 1 hour ago | Replies (107)Comment receiving replies
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.
Replies to "My pancreas had an 8x6cm tumor. My liver also had innumerable lesions with the largest being..."
@tomrennie
Thank you for getting back. I wish you all the best! Sounds like things are going well! You mentioned that you did experience side effects? Did you get used to Captem at aome point? That is great that you didn't need any other therapies, but Captem. Awesome story! Thanks again.
I have metastasis to my bones as well - started in the femur and now spread to my ribs and scapula. I had three rounds of radiation, but the tumors still persist. Have your Doctor's done anything to treat the tumors in your bones and/or have they gone away or gotten smaller from the chemo? Also, do you experience any side effects from the bone lesions?
Thanks!
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@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….