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Lost with no confirmation of NETs origin: Innumerable liver lesions
Neuroendocrine Tumors (NETs) | Last Active: Mar 31, 2023 | Replies (77)Comment receiving replies
I met with my oncologist. The big tumors on my pancreas are about half the size of what they were when I started CAPTEM 7 months ago. The over 200 lesions on my liver have stabilized or shrunk. Yay! I start another CAPTEM chemo cycle tomorrow. I get so excited to start chemo again cause it is working. I will suck up two weeks of feeling like crap if it is working.
Replies to "I met with my oncologist. The big tumors on my pancreas are about half the size..."
@tomrennie, that is exciting that the tumors are responding to chemo with capecitabine and temozolomide (CAPTEM). How often do you have treatments? All the best today!
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@lastround your diagnosis seems so similar to my dads story in the sense of areas affected and different grades along with the increased amount of liver masses- do you experience any pain? Pain management has been the ultimate struggle. Fentanyl patch along with dilaudid pills are hardly keeping him at bay. He’s naturally a very active guy so I’m sure this is a struggle of itself with not being able to do the things he wants to do. With the pain on the side of his liver along with always feeling bloated and I’m sure related to the tumor burden of his small intestine. Do you experience any pain and what has usually helped you? He’s on cycle 3 so far and we were hoping chemo would help with pain in hopes of shrinking the big guys that were causing the pain, but might not be the case.