Mayo Clinic Connect
Has anyone had any experience with the use of Folfox. I have tried it and it seems to actually shrink the liver carcinoids after a 4 cycle regimen. Working on second regimen.
Hello @kenlucier and welcome to Mayo Connect!
You ask a good question. Most folks in our NET group use Sandostatin but let’s hear from everyone in our group.
Please meet @amyh2439 @tresjur @joannem @gaylejean @lucci50 @derekd @gulzar @joanney @jenchaney727@dzerfas @lorettanebraska @wordnoid @trouble and @upblueeyes @ahtaylor @heidilynn4 @junebug15 @tomewilson @gman007 @mollie59 @amani79 @collielady @somefan @debf Has anyone used Folfox for PNETs to the liver?
Ken, I am glad to hear that your carcinoids are shrinking. How are you feeling?
Liked by Justin McClanahan, Connect Moderator
Mine was removed completely and I have not had a recurrence. Never took any drugs for it before or after. I hope the med you are on works well, Ken.
Liked by Lisa Lucier, Connect Moderator, Teresa, Volunteer Mentor
I appreciate your responding to Ken’s post. Everyone’s NET experience is different based on location, symptoms, etc. Would you mind sharing with Ken more about you NET diagnosis? Some information like the number of NETs, where they were located, your symptoms before surgery, what type of surgery you had and if you had carcinoid syndrome (i.e., flushing, diarrhea, etc.)?
I was dx’ed with chronic pancreatitis about ten years ago after several hospitalizations with acute Pan. I had numerous procedures to attempt to relieve my pain and none were successful for very long. My pain level had gotten beyond being helped very much by medication, CBT, or any other therapy. I went to MUSC to have a celiac plexus block and when the endoscopist went in to place the shot, he saw a tumor in my pancreas. My surgeon had me back within two weeks to have it removed. When she got a look at it, because the pancreas is a soft organ, the distal, or tail end, had essentially begun to dissolve, so she removed that section of my pancreas and my spleen. I guess my primary symptom was an increased level of pain, but because that is the primary symptom of pancreatitis, I don’t think we would have discovered the tumor without the shot being planned. I had already had an MRI and CT scan to attempt to determine the cause of my increased pain level and they did not reveal the tumor. It was sliced and many slides made, but it did not contain carcinoids or other cancerous tissue.
Liked by Teresa, Volunteer Mentor
Hello Ken @kenlucier
I was thinking about you and I hope that you are doing well. Have you completed the second regime of Folfox?
Just wanted to check in with you to see how you are doing.
Have you had any new Folfox treatments yet? How are you feeling?
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