Pancreatic Cancer Group: Introduce yourself and connect with others

Welcome to the Pancreatic Cancer group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with pancreatic cancer or caring for someone with pancreatic cancer. Let’s learn from each other and share stories about living well with cancer, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by fellow members and volunteer patient Mentors, when you post to this group. Learn more about Moderators and Volunteer Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Pull up a chair. Let’s start with introductions.

When were you diagnosed with pancreatic cancer? What treatments have you had? How are you doing?

Hello @mountainmama45 and welcome to Connect.

I am glad that you found this online support group as well! I'm sorry to hear of your daughter's diagnosis, but it sounds as if she has a treatment plan in place and that is a good thing.

Would you be comfortable sharing any more about how your daughter's diagnosis came about? Such as her symptoms, tests, etc. Do you know what type of chemo she will be having?

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@marvinjsturing

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.

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@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?

Liked by debsid

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@chemobile

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.

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Thank God you were proactive and got a second opinion from Mayo. We love our team!

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@cindee60

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.

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If you go to creon website you can get it ay a discount. We've gotten 2 months worth at 5 dollars per month instead of 90. They also give you multivitamins.

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@beckyvolk

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.

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Blessings. Believing in healing

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@colorafo19

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!!!!

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Believing in healing with you <3

Liked by debsid

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@marvinjsturing

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.

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Praying for you

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@hopeful33250

@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?

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@hopeful33250 First and foremost, my life and my future are in the hands of a powerful and loving God. With him by my side I can handle anything. Still at this time the hardest part is the uncertainty and the waiting. I know my tumors and lymph nodes are larger than they were in February. Don t know if that is the result of radiation or if they are growing. I won't really know until I get another PET scan in 3 months. Meanwhile, I thank God and will celebrate every day of life he gives me.

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@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!

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@susan2018

@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!

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Good luck… we're not there yet but am interested in replies.

Liked by marvinjsturing

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@susan2018

@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!

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@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.

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@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.

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@marvinjsturing

@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.

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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.

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@colorafo19

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.

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Does the stent clear naturally? My hubby was feeling really poorly for 3 weeks at the end / after radiation. I am going ask about the bile duct stent /billiruben next time as we had a huge increase of ca19-9 during that time. Another test coming soon. Thank you! Blessings

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@susan2018

@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.

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Praying for your husband.

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