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Replies to "Hoping all is going well for you. My husband is in the middle of his 4th..."
Neuroendocrine Tumors (NETs) | Last Active: Nov 11, 2023 | Replies (210)
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Hoping all is going well for you. My husband is in the middle of his 4th Cap/Tem treatment and seems the best he has been in 18 months. Tumors are shrinking and very little side effects. His tumors on his liver were found by a surgeon doing hernia surgery. He said there were lesions all over his liver and sent him in for an MRI. Not sure as I am not a medical professional but the MRI seems better at finding the lesions than the ct. Your story is encouraging as he was originally told he wouldn’t last 6 months. We are 18 months in and the doctor is now looking ahead a year. No Mayo’s near us. We are at Dana Farber and very happy with our treatment for such a rare cancer. Keep up the fight as we are.
Replies to "Hoping all is going well for you. My husband is in the middle of his 4th..."
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Always keeping the fight! Glad to hear you have a great experience at Dana Farber. Being comfortable and confident in your care team is certainly an important part of the battle. Both my oncologist and endocrinologist have told me MRI is a better imaging specifically for the liver (vs. CT). Good to hear the outlook is getting more positive. 9 years since my original diagnosis and 6 months since the liver mets for me - still doing very well, hypoglycemia is reasonably controlled with medication and feeling good 🙂
On 2nd round of Sandostatin (LAR) since the beginning of the year. Severe allergic reaction on the first round and had to do an allergy desensitization so I could take it again - as it was the medication that worked the best at controlling the hypoglycemia. Recently have found gallbladder distention and common bile duct dilation on a CT and MRI that is attributed to the Sandostatin. Not having significant or consistent symptoms though - so just monitoring liver enzymes and for symptoms for now.
Does anyone else on Sandostatin long term have experience with gallbladder issues? I know it is one of the risks with Sandostatin . . . . Just curious what others had experienced.
Best wishes in your journey!