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?

Hi @dakotarunner @marvinjsturing @moo1 @cindee60 @dianamiracle @natalex @susandc @salledell @nasagia36 @beachgirl23 @search4healing @nogginquest @sucante. Welcome to the new group on Connect dedicated to pancreatic cancer:
– Pancreatic Cancer https://connect.mayoclinic.org/group/pancreatic-cancer/

Be sure to +Follow the group. Why not start by introducing yourself? Share your story: When were you diagnosed with pancreatic cancer? What treatments have you had? How are you doing?

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Hi, everyone. I was diagnosed with pancreatic cancer on May 9, 2014. My Whipple was performed by Dr. Farnel at Mayo in Rochester on June 5, 2014. The surgery took 8 1/2 hours. The doctor removed most of my pancreas, part of my stomach and my duodenum. What was left of my pancreas was so bad that the doctor didn't even connect it back into my digestive system. I was Staged at 2b because cancer was found in 1 of the 64 lymph nodes that were removed. Surgery was followed by 6 months (18 infusions] of gemcitabine or gemzar. My last treatment was December 30, 2014. I was looking forward to a new year with out any treatments only to discover that I had a very rare reaction to the chemo and developed atypical Hemolytic Uremic Syndrome. I spent the next 10 months going to Mayo for treatment. By the time they got the aHUS under control, my kidney function was down to 15%. In order to be listed on the kidney transplant list, I had to be cancer free for 5 years. That happened last June. My sister had offered to be a donor for me. Two weeks before she was scheduled for her testing, she was diagnosed with mantel cell lymphoma. She has now finished her chemo and is working on getting a stem cell transplant. I am not yet on dialysis. As far as I know, I do not have anyone working on becoming a donor so I am now waiting for a deceased donor. At this time I am grateful just to be alive. The biggest issue I deal with on a daily basis is fatigue. I typically need a nap in the afternoon. Because in essence I have no pancreas I am treated as a Type I diabetic and have to take Creon every time I eat. Other than that, I have a pretty good quality of life. I often tell people that other than diabetes, pancreatic cancer and chronic kidney disease, I am in perfect health!

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my father (in 1946) and brother (in 2014) died of pancreatic cancer. do i need to worry about my children and grandchildren?

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@amomynous

my father (in 1946) and brother (in 2014) died of pancreatic cancer. do i need to worry about my children and grandchildren?

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Hi @amomynous, A family history of genetic syndromes may increase pancreatic cancer risk, including a BRCA2 gene mutation, Lynch syndrome and familial atypical mole-malignant melanoma (FAMMM) syndrome. Keep in mind that familial pancreatic cancer accounts for only 10% of all pancreatic cancers. You might find this article of interest.

– Mayo Clinic discovers gene mutations linked to pancreatic cancer, calls for expanded testing https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-discovers-gene-mutations-linked-to-pancreatic-cancer-calls-for-expanded-testing/

Has your family considered genetic testing? Would that information calm you or increase the worry?

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@colleenyoung

Hi @dakotarunner @marvinjsturing @moo1 @cindee60 @dianamiracle @natalex @susandc @salledell @nasagia36 @beachgirl23 @search4healing @nogginquest @sucante. Welcome to the new group on Connect dedicated to pancreatic cancer:
– Pancreatic Cancer https://connect.mayoclinic.org/group/pancreatic-cancer/

Be sure to +Follow the group. Why not start by introducing yourself? Share your story: When were you diagnosed with pancreatic cancer? What treatments have you had? How are you doing?

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Hello, I was diagnosed with pancreatic cancer in April 2019, had whipple surgery in May 2019. In the report they are calling this Ampullary cancer but still took 1/2 of my pancreas along with parts of what goes along with this type of surgery. I have had a terrible reaction to Creon, switched to over the counter Papaya Enzymes. They also became a problem so now fighting this with foods that build digestive enzymes but still having issues with stool problems. I feel very lucky compared to marvinjsturing, hang in there Marvin. Does anyone have any suggesting on how to handle my issue?

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@colleenyoung

Hi @amomynous, A family history of genetic syndromes may increase pancreatic cancer risk, including a BRCA2 gene mutation, Lynch syndrome and familial atypical mole-malignant melanoma (FAMMM) syndrome. Keep in mind that familial pancreatic cancer accounts for only 10% of all pancreatic cancers. You might find this article of interest.

– Mayo Clinic discovers gene mutations linked to pancreatic cancer, calls for expanded testing https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-discovers-gene-mutations-linked-to-pancreatic-cancer-calls-for-expanded-testing/

Has your family considered genetic testing? Would that information calm you or increase the worry?

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only one of my sons got checked and none of the grandchildren yet.

"May this be the worst day of your life".
Old Irish blessing.

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@treadmillann

Hello, I was diagnosed with pancreatic cancer in April 2019, had whipple surgery in May 2019. In the report they are calling this Ampullary cancer but still took 1/2 of my pancreas along with parts of what goes along with this type of surgery. I have had a terrible reaction to Creon, switched to over the counter Papaya Enzymes. They also became a problem so now fighting this with foods that build digestive enzymes but still having issues with stool problems. I feel very lucky compared to marvinjsturing, hang in there Marvin. Does anyone have any suggesting on how to handle my issue?

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Welcome @treadmillann. Have you seen this video by a Mayo Clinic physician?
– Cancer-Fighting Foods https://connect.mayoclinic.org/webinar/cancer-fighting-foods/

@marvinjsturing also started this discussion about enzyme replacement that you may wish to add to:
– Pancreatic enzyme replacement https://connect.mayoclinic.org/discussion/pancreatic-enzyme-replacement/

What foods are helping you? What are you doing about the bowel/stool issues?

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@amomynous

only one of my sons got checked and none of the grandchildren yet.

"May this be the worst day of your life".
Old Irish blessing.

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@amomynous, was your son helped by getting the genetic testing or did it make him more anxious?

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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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@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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Hi @cindee60, I moved your message to this introductions discussion so that you can meet both people living with pancreatic cancer and people who are caring for other family members with pancreatic cancer, like @search4healing @natalex and @nasagia36.

@treadmillann was also talking about looking for enzyme replacement options. See her message above. You may wish to add your questions to this discussion:
– Pancreatic enzyme replacement https://connect.mayoclinic.org/discussion/pancreatic-enzyme-replacement/

Cindee, I can imagine that you are feeling very alone with this diagnosis. I'm glad that you have the support of others here on Connect. It's great that your husband is a good candidate for the Whipple surgery. That's good news. When is he scheduled to have the surgery? What questions do you have or what concerns you the most?

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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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@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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always check mayo!  i was told by both clinics in town that my tia's,
vertigo, et al., were anxiety.  it was an ulcerated carotid that was
rolling up spitballs and shooting  them into my brain. mayo operated at
7pm and i went home the next morning with every single symptom gone.

"May this be the worst day of your life".
Old Irish blessing.

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Hello everyone. My husband was diagnosed In July of 2018 with cancer in the pancreas tail with metastases to the liver in addition to veins around the spleen. We came to Mayo hoping it might be operable, or failing that, eligible for a clinical trial. The trial drug, along with Abraxane and Gemzar stopped working after 9 months. Then he began a regimen with 5 FU. Now I am afraid resistance is again setting in. Even though the last scan did not show progression, his CA 19-9 has begun to rise and his ascites are accumulating at an ever faster rate. He has to have them drained every 10-14 days. The last progress notes mentioned speaking to us about a biopsy on his next visit. I am hoping for better news, but fearing the worst. Stories of hope are most welcome!

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@julie2018

Hello everyone. My husband was diagnosed In July of 2018 with cancer in the pancreas tail with metastases to the liver in addition to veins around the spleen. We came to Mayo hoping it might be operable, or failing that, eligible for a clinical trial. The trial drug, along with Abraxane and Gemzar stopped working after 9 months. Then he began a regimen with 5 FU. Now I am afraid resistance is again setting in. Even though the last scan did not show progression, his CA 19-9 has begun to rise and his ascites are accumulating at an ever faster rate. He has to have them drained every 10-14 days. The last progress notes mentioned speaking to us about a biopsy on his next visit. I am hoping for better news, but fearing the worst. Stories of hope are most welcome!

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Hi @julie2018, welcome to Connect. You're not alone. Members like @chemobile @cindee60 @marvinjsturing @nogginquest and @dianamiracle have stories of hope to share. Here are a few:
– Pancreatic Cancer Stage IV and in partial remission https://connect.mayoclinic.org/discussion/pancreatic-cancer-stage-iv-and-in-partial-remission/
– Celebrating Life after Pancreatic Cancer! https://connect.mayoclinic.org/discussion/celebrating-life-after-pancreatic-cancer/

Julie, is your husband's ascites being managed closer to home? When do you travel to Mayo again?

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@colleenyoung

Hi @julie2018, welcome to Connect. You're not alone. Members like @chemobile @cindee60 @marvinjsturing @nogginquest and @dianamiracle have stories of hope to share. Here are a few:
– Pancreatic Cancer Stage IV and in partial remission https://connect.mayoclinic.org/discussion/pancreatic-cancer-stage-iv-and-in-partial-remission/
– Celebrating Life after Pancreatic Cancer! https://connect.mayoclinic.org/discussion/celebrating-life-after-pancreatic-cancer/

Julie, is your husband's ascites being managed closer to home? When do you travel to Mayo again?

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Thank you, Colleen. I have some happy reading ahead of me. Yes, we’re managing the ascites locally. In fact, my husband has a tapping scheduled for tomorrow afternoon with his chemo pump still attached! in the meantime, he is so looking forward to meeting our first granddaughter on Christmas Eve. Life is full of blessings!

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