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We are a year and half into our journey in living with NET. I can’t remember our Ki- score, but believe it was a grade 1. CAP/TEM was prescribed immediately along with Lanreotide injections, and after 6 months, she had 50% reduction, and feeling was the doctors were surprised those results were so positive, as everyone has different results. But CAP/TEM is the one of the better options, that helped us get control of my wife’s NET. The original plan was only to do 6 months as your body tends to not get much reduction after 4 months on it. So we continued another 3 months and achieved close to 80% reduction on mass on pancreas and tumors on liver were reduced to where she had about 20 tumors on both lobes of liver. This progress allowed for surgery in March 23, to remove pancreas mass, spleen, gall bladder, and debulk as many tumors as they could get. There is still some remaining NET in her liver. Our team’s plan is while it is in a the smallest amount, to do 4 PRRT treatments to knock it down even further. Back to your question on a Mtn. Function. Our team has mentioned that we have knocked the NET down significantly with the treatments and surgery, but since it is not curable, but going forward other options to keep it down are available, along with if we only have it in her liver, the team is educating us on a possible liver transplant if needed in 2-3 years depending on how the PRRT treatments work. I hope this helps you, I would ask your team if/when CAP/ TEM will be considered. Let us know what other questions you may have, we are all in on beating NET together. We got this! 👍

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Replies to "We are a year and half into our journey in living with NET. I can’t remember..."

Thanks for the prompt reply kim1965. I appreciate the additional information and will definitely discuss with my care team the possible use of CAP/TEM. I still did not understand what the term meant and interestingly the NIH Dictionary of Cancer Terms showed "no result" for "CAP/TEM." But with a bit more searching I now understand this is short for "capecitabine and temozolomide" and I was able to find a clinical study applying this therapy with good results to patients with NETs that had metastasized to the liver. Can you tell me, what does the term "Mtn. Function" mean? As you can tell I'm still not familiar with all the terminology related to NETs. Thanks again for your help!