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Neuroendocrine Tumors (NETs) | Last Active: 1 day ago | Replies (410)Comment receiving replies
Hi Lenora, I am the leader of The Wisconsin Neuroendocrine Cancer Connection, a group of 163 and growing people who have Neuroendocrine Cancer and live in Wisconsin. My wife was DX with NETs in April 2015 and has been seen at Mayo Rochester by Dr. Halfdanarson who is a NETs specialist. She is a midgut, stage 4, mets to the liver with a less than 2% mitotic rate. She has been receiving Octreotide injections monthly for a few years now. This followed surgeries at Mayo in Oct 2015 and Dec 2016. She is also on Everolimus daily (a pill) and Xermelo 2 times daily (pill). The Everolimus is to control growth of the liver tumors and the Xermelo is to reduce circulating serotonin which is believed to be effecting her tricuspid valve resulting in Carcinoid Heart Disease (CHD). If I may ask what you 5HIAA results were? It is important to have an echo of the heart every year or two to check for CHD. Also, monitoring systems or having a simple blood test first (Pro BNP) is recommended. Please feel free to ask questions. I'm happy to speak by phone as well. Another resource I recommend is NCAN.org - it is the largest patient directed resource for NETs globally.
Replies to "Hi Lenora, I am the leader of The Wisconsin Neuroendocrine Cancer Connection, a group of 163..."
Hello Tom, Thanks for sharing your wife’s experience with NETs. You asked about my 5HIAA results. It was 29.5 mg/day. It should have been less than 10 to be within normal range. I recall that the GI specialist remarked how surprised he was that I had such extensive metastasis since the test results did not correlate with the findings. I don’t know how valid that comment was since his experience with the disease was so limited.
I am curious about the drug tx your wife is getting. Has it been helpful?
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Thanks so much for your response. It is heartening to know that your wife has been living with this disease for nearly 7 yrs. I hope her quality of life is good. I have midgut stage 4 / grade 2 NETs. with mets as I described before. I have recently requested the actual numerical results for the 5HIAA . I know that it is somewhat predictive of prognosis. I was reluctant to ask because I wasn't
ready to deal with it at the time. However, I do recall that when the GI doctor told me it was abnormal; he was surprised that the number did not reflect the extensive amount of metastasis seen on the abd. CT.
I am curious to know when the the medications mentioned were added to your wife's treatment plan. I have been told that I may be a candidate for PRRT( Peptide Radioreceptor Therapy) in the form of Lutathera if my disease progresses. Right now it is more of a risk than a benefit. I had a cardiac echo which was normal. I am due for an abd CT at the end of February.
Thanks so much for the resources. Knowledge is power!
Lenora