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Ken
@kenlucier

Posts: 1
Joined: Aug 12, 2017

PNET metastasis to the liver

Posted by @kenlucier, 6 days ago

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.

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Teresa, Volunteer Mentor
@hopeful33250

Posts: 2043
Joined: Mar 28, 2016
Posted by @hopeful33250, 6 days ago

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?

Teresa


gman007
@gman007

Posts: 50
Joined: May 18, 2016
Posted by @gman007, 5 days ago

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.

Gary


Teresa, Volunteer Mentor
@hopeful33250

Posts: 2043
Joined: Mar 28, 2016
Posted by @hopeful33250, 5 days ago

Gary @gman007

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.)?

Teresa


gman007
@gman007

Posts: 50
Joined: May 18, 2016
Posted by @gman007, 5 days ago

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.

Gary

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