Pancreatic Cancer Group: Introduce yourself and connect with others

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?

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!

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

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?

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?

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.

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?

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

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.

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?