Pancreatic Cancer Group: Introduce yourself and connect with others

@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!

@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?

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.

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!!!!

My name is Becky. I was diagnosed in August of 2018. I had chemo, radiation and then the Whipple Surgery. I later had another chemo after surgery. Cancer free. I am doing pretty well.

Hello, I am a caregiver for my husband
Who has been recently diagnosed with pancreatic cancer. The surgeon has said he feels this is completely removable doesn’t think a Whipple is required and said it is about a 2 cm tumour. My husband is experiencing greasy orange stool which I know I have read on here others have had. I want him to go to family dr tomorrow and get pancreatic enzymes. I got some for him from health food store but they don’t seem to be helping much with gas and diarrhea. I’d love to hear from others who have been diagnosed, are caregivers or have had any surgery for this cancer.

I was diagnosed with pancreatic cancer in late April, 2007. My diagnosis came as result of awakening one morning with jaundiced skin. My wife and daughter insisted that I see my primary physician to determine cause. He initially suspected gall bladder, but did not feel right about that and asked me to enter hospital for more extensive tests. The tests confirmed that I had pancreatic cancer. A local surgeon stated the cancer was on an artery and could not be surgically removed. He estimated the cancer to be early stage 3. What he and the local oncologist failed to tell me was that there are a select few surgeons in this country who can sometimes perform this surgery, depending upon the exact nature of the arterial location. In addition, the next morning, while still in hospital, an oncologist contacted by my primary physician told me my cancer was "the worst of the worst and there was no cure". He added that I was "as old as dirt anyway". I was 82 at the time, but I had and still have three living siblings older than me and my dad lived to 97. My wife fired him that day.
I requested to start a chemotherapy regimen and I spent many hours researching on my computer and found that Mayo clinic not only had several surgeons qualified to perform arterial resection to remove the cancer, but they even showed a diagram of it on their website. I immediately contacted their Jacksonville, Florida clinic, which is about a seven hour drive from my home in south Alabama.
I requested and was granted an appointment with one of two surgeons at that clinic who is skilled in whipple procedures involving arterial resection. After MRI, CT scan and other testing, he advised I was a candidate for surgery. He suggested I complete six chemo treatments prior to surgery. When I returned for surgery, the chemo had broken up the arterial involvement (which the surgeon and oncologist both stated was very rare) and arterial resection was not necessary, He did perform the whipple procedure, and I tested cancer free in all quarterly check-ups during the first year following surgery. At my fifth check up a small spot appeared at the site of the surgery on the pancreas, but the surgeon and oncologist do not believe it is cancer, I am scheduled for follow up MRI on the 20th of December to see what further action, if any, needs to be taken,
I am urging everyone that I come into contact with to seek a second opinion from one of the leading cancer treatment centers if a local doctor diagnoses them as having cancer; especially pancreatic. I believe I read in Mayo literature that something like 80+ percent of patients who come to them for second opinion are found to have been misdiagnosed by their local doctor. After my surgery, I learned that there are several cancer clinics who have surgeons qualified to perform arterial resection with whipple surgery if needed. What upsets me most about my cancer other than the cancer itself is that the local oncologist admitted to me after my surgery that he was aware that there were surgeons in other states qualified to perform arterial resection surgery as part of the whipple surgery but neither he nor any of the other local doctors involved in my treatment told me about them. If I had not sought a second opinion on my own, I would not be typing this message today.

I had tests done this morning at Mayo - Rochester to see how things went after radiation. I met with my oncologist this afternoon to talk about the results. The blood tests showed that my kidney function was down to 15% (for me, that's pretty normal). The blood tests also showed that CA 19-9 has gone down. The PET scan showed that the tumors on my pancreas and the surrounding lymph nodes have grown in size. It is possible that this is a result of the radiation. At this time, the plan is to monitor things by doing CA 19-9 tests monthly. If it remains steady or continues to go down, I will wait 3 months before getting another scan at Mayo. If it starts to increase, I will have to go back to Mayo sooner. If future scans show no change in the size of the tumors or if the tumors shrink,  I will receive no treatment. We will just continue to monitor things with quarterly PET scans. If the tumors start to grow, I will need to start chemo. Because of my kidney problems, if I receive chemo,  I will also have to have dialysis after each chemo treatment.