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I was very interesting to read about your wife’s case. Sounds very similar to mine but she achieved a reduction in her tumors far in excess of what my oncologist told me to expect. I have a 3 cm. pNET on the tail of my pancreas and metastases to my liver too numerous to count. My Ki-67 score was 9 which puts me in grade 2. Can you tell me your wife’s Ku-67 score?

I received my diagnosis and treatment plan at Mayo clinic in Rochester MN. I’m getting lanreotide injections at University of Michigan cancer center so I don’t have to travel to Rochester. I’m scheduled for my fourth injection in one week.

Can you please tell me what is “CAP/TEM.” Is this something in addition to the lanreotide? My MAYO oncologist told me not to expect any major reduction in tumors such as your wife’s 80% reduction. He told me it was only reasonable to hope that it would slow the progression of my NETs. Also, can you please tell me what you meant by the term “a mtn. function”?
Thanks very much.

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Replies to "Kim1965, I was very interesting to read about your wife’s case. Sounds very similar to mine..."

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! 👍