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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
@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.
Replies to "@lastround your diagnosis seems so similar to my dads story in the sense of areas affected..."
I haven’t had any problems with pain. My biggest problem is with Neuropathy in my hands and feet. After 6 months of chemo [Folfox, 5FU] I am weak and the Neuropathy in my feet makes me unstable on my feet. I’ve fallen a couple times and can’t get up afterwards because I’m so weak.
I am starting to be able to eat again. Food was metallic tasting and couldn’t eat but taste is coming back.
I’m guessing the pain your father has may be from his intestinal issues. I was told last August by my 2nd doctor
“Don’t worry, Death from Liver failure is painless” that was my last appointment with that s.o.b.
If you don’t feel comfortable or the treatment isn’t working I can’t stress enough, get a second or third opinion. From what I know about Fentanyl it can put down an elephant, so if that isn’t working ask what else could be causing the pain. Could it be gas? That can be extremely painful. Chemo can give you gas, I know first hand, but I’ve been able to pass it thankfully.
The chemo did shrink my tumors [ 10 centimeters to 4] so tell him to keep fighting.
Best of luck
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I had some pain around my back and side, but that is about it. The chemo makes me ache all over like the flu. Nothing too bad though. I will take 5mg of oxycodone and I am fine. I was bloated too. Turns out that I had fluid in my stomach area. 8.5 liters were drained. I felt so much better and my stomach pain was gone. 7.5 liters were drained 3 weeks later. That was last October. It hasn't happened since.