Not locally advanced--it's actually stage 4

Do you know what kind of cancerous tumors you have? For example, I have stage IV pancreatic cancer with neuroendocrine tumors. Please ask away. Some one on here has valuable input but the type of tumor makes a difference on treatment. I hope I am making sense?

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OK thanks, that makes sense. I do not know what specific type of tumor I have; neuroendocrine was not mentioned, but nothing else was either. As you say, the specific type makes a difference in the treatment plan. It's my understanding that that's why they'll test the tissue samples--to see exactly what they are and what they might respond best to. We'll start with the modified Folfirinox until we have those results. The testing will be done by Caris and is called next-generation sequencing. It's supposed to provide detailed molecular profiling including DNA, RNA and proteins to help target the cancer with specific medications.

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OK, saw the medical oncologist this morning and have much more info. He said the scans clearly show the mass in the body of the pancreas, but nothing else. However, his visual check during the laparoscopy shows several small, flat spots of cancer throughout the abdomen. He described it as if someone had flicked their fingers and sprinkled a drop here and a drop there. They're too tiny to appear on the scans, but he can see them. I'm going to begin chemo on 4/24--modified Folfirinox regimen. I need to quit my job and go on part-time disability if they'll approve it. I still have very few effects from the cancer, just an occasional light backache and sometimes off-appetite, but nothing else. The MD is estimating I'll start to feel more effects by June or July. He is estimating 1-3 years survival, so our new motto, to misquote Buzz Lightyear, "To 3 years and beyond!" One more intriguing side note: The MD said that in 20 years of practice, I am the first patient he's met whose cancer was discovered during screening/preventative assessments. Oh yeah, we're going to test the tissue samples to determine whether this chemo regimen is the best or whether there is another combo of drugs that might be more effective.

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I appreciate everyone's concern about the Caris testing. Here's my take on it: I am not operable and likely never will be. BTW, I have pancreatic ductal adenocarcinoma, stage 4, head, wrapped around blood vessels. So chemo is my only line of defense. If we can determine the most effective, specific chemo regimen for my cancer cell type, whether that's modified FOLFIRINOX or some other combo, that seems like a wise move to me. I don't see it as any different than traveling to get a second opinion (which would be pointless for me anyway). To look at it another way, Caris IS the second opinion. Some years ago, we traveled to NYC and Philadelphia to give our younger son the best clubfoot care possible. (We are adoptive parents, and he joined us with the results of inappropriate surgery and treatment in his country of origin.) We know how expensive airline flights, hotels, food, cabs etc. are, and none of that is covered by insurance--it's all out of pocket. In this case, Caris is in network for traditional Medicare A/B and my supplement, so I am hopeful that while we may owe a copay, it won't be the total cost. If it is, we are fortunate that we can handle it. It does help that our kids are mostly on their own; we still have a son in grad school and a son in undergraduate school, but our daughters are out and working. Those were rough years financially, but we're in better shape now, and that helps.

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I appreciate everyone's concern about the Caris testing. Here's my take on it: I am not operable and likely never will be. BTW, I have pancreatic ductal adenocarcinoma, stage 4, head, wrapped around blood vessels. So chemo is my only line of defense. If we can determine the most effective, specific chemo regimen for my cancer cell type, whether that's modified FOLFIRINOX or some other combo, that seems like a wise move to me. I don't see it as any different than traveling to get a second opinion (which would be pointless for me anyway). To look at it another way, Caris IS the second opinion. Some years ago, we traveled to NYC and Philadelphia to give our younger son the best clubfoot care possible. (We are adoptive parents, and he joined us with the results of inappropriate surgery and treatment in his country of origin.) We know how expensive airline flights, hotels, food, cabs etc. are, and none of that is covered by insurance--it's all out of pocket. In this case, Caris is in network for traditional Medicare A/B and my supplement, so I am hopeful that while we may owe a copay, it won't be the total cost. If it is, we are fortunate that we can handle it. It does help that our kids are mostly on their own; we still have a son in grad school and a son in undergraduate school, but our daughters are out and working. Those were rough years financially, but we're in better shape now, and that helps.

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