Pancreatic Cancer Group: Introduce yourself and connect with others

My name is Carrie. My husband was diagnosed with pancreatic cancer November of 2017. He underwent chemotherapy and radiation for 9 months. Had a Whipple in November 2018. That sequence of chemo/radiation first definitely saved my husband’s life. He had 9 months after the Whipple of no chemo. He did develop a blockage in area of his bile duct. He now has a stent that needs to be replaced every 3 months. After one of the procedures changing out the stent he developed an infection. After further testing the cancer has now metastasized to his lungs. Very small nodules but back on chemo. We will beat this!!!!

We recently moved and I had to find new doctors. My new oncologist ordered a PET scan for me. Two doctors reviewed the results of my PET scan. The first one said the results were inconclusive. The second doctor said that there may be some evidence that my cancer has come back. I asked Mayo to review the reports. After looking over everything, Mayo scheduled me for a PET/MRI scan at the end of February. There has been no evidence of cancer for the past 5 1/2 years, so I am hoping that it was just a fluke with the scan. If the cancer has come back, I will not be able to proceed with a kidney transplant until the cancer has been addressed.

@marvinjsturing It is so good to hear from you, Marvin. I pray that your CA19-9 continues to go down. How are you feeling now?

@marvinjsturing I think we may have communicated in the past. I just reviewed your posts. I’m wondering how you’re doing, whether there is any news. My husband had his stage IIA pancreatic cancer diagnosis after a Whipple at Mayo for IPMN pancreatic cysts the end of August last year. He then had 6 months of Folfirinox chemo. We’re going back to Mayo the end of this month after a locally done CT and PET scan evidently shows something that is worrisome at the surgical bed. His CA-19 and CEA labs are within normal range but we haven’t met with our local oncologist yet to be briefed on the PET results. We don’t know much yet, only that Mayo has already called us and scheduled him for multiple appointments, EUS, surgeon, oncologist and with a radiation oncologist. So any insight anyone can share about Radiation after Whipple and Chemo would be appreciated. I obviously don’t know much at this point. I’m wondering what Mayo recommends, regular radiation vs proton, and on what basis. Hope you are managing and thanks!

@marvinjsturing I think we may have communicated in the past. I just reviewed your posts. I’m wondering how you’re doing, whether there is any news. My husband had his stage IIA pancreatic cancer diagnosis after a Whipple at Mayo for IPMN pancreatic cysts the end of August last year. He then had 6 months of Folfirinox chemo. We’re going back to Mayo the end of this month after a locally done CT and PET scan evidently shows something that is worrisome at the surgical bed. His CA-19 and CEA labs are within normal range but we haven’t met with our local oncologist yet to be briefed on the PET results. We don’t know much yet, only that Mayo has already called us and scheduled him for multiple appointments, EUS, surgeon, oncologist and with a radiation oncologist. So any insight anyone can share about Radiation after Whipple and Chemo would be appreciated. I obviously don’t know much at this point. I’m wondering what Mayo recommends, regular radiation vs proton, and on what basis. Hope you are managing and thanks!

@susan2018 At this the plan is to check .CA 19-9 monthly. In February at Mayo it was 164. In Sioux Falls in June it was 86. At Mayo in July it was 126. The jump from 86 to 126 sounds like too much just to be a difference in labs. It will be interesting to see what it is in Sioux Falls next month. My understanding is that typical treatment for recurrence is radiation and chemo. I was told that radiation alone has a 30% success rate and radiation and chemo together have a 40% success rate. With my kidney problems, if I did chemo I would also have to do dialysis. To me, the added benefit of chemo was not worth the extra requirement of dialysis. I will be going back to Mayo for another PET/MRI scan in October. We will have a better idea of future treatment after that. Last February, I had an EUS/biopsy done and I consumed with a surgeon who told me that surgery was not an option for me.

My husbands experience with the CA 19-9 has been similar to yours. It goes up and them comes back down. If his stent that he has in his bile duct gets sludge in blocked that will elevate the number. If his bilirubin goes up that usually means the CA 19-9 goes up as well. When they replace the stent it usually goes up a bit just from the Doctor going in to replace the stent.

@marvinjsturing thanks for the update. I am very interested in how you continue to do. I hope you are able to make the most of these days despite the pandemic and that you are feeling tolerably well. Your numbers are interesting. We got the results of my husband’s PET scan today. There is an area at the surgical site that is apparently either a recurrence or simply inflammation. He was staged as IIA at surgery and has had this area which includes some fat necrosis ever since Whipple. But now the area is a little bit larger in area and the pancreatic duct is some dilated. His CA-19-9 is 9, two months ago it was 10 but it has never been outside normal range. CEA is normal also. So we’re in a waiting game before Mayo appts, as you are. I was interested in the radiation/chemo percentages. Thanks so much.