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?

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

Profile picture for tomdecker1117 @tomdecker1117

Diagnosed with pancreatic cancer in February and then going through chemo ever since. I’ve been looking for options and hearing about a doctor Hopf At the hospital in Arizona involving clinical trials and such. I live in Florida and I’ve been being treated at Mayo in Jacksonville Does anybody have any insight about this doctor or clinical trials in Arizona? Thanks

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I think you are speaking of Dr Von Hoff. He is a leader in the world of Pcan. He works out of Virginia Piper Cancer institute with another incredible physician, Dr Borazanski. They are located in Scottsdale. I did a consult with them in May.

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Profile picture for asutton0144 @asutton0144

I was diagnosed with Stage 2 Pancreatic Cancer…… my grandfather and an uncle had the same.
I’ve been reading as much as I can all the while trying not to cry
Looking forward to sharing / reading in this thread

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asutton0144,
Go ahead and have a good cry! It is perfectly understandable that you would want to do that. Get it out of your system. I know I had myself a few when I found out I had pancreatic cancer & then found out it was stage IV not I! Find yourself a good oncologist. Try using Pan Can network too! They have helpful people to talk to & information you will use. It will be 2 years since my diagnosis/prognosis, and I am so thankful for still being here. If you believe in prayer, then ask for that!

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Profile picture for asutton0144 @asutton0144

I was diagnosed with Stage 2 Pancreatic Cancer…… my grandfather and an uncle had the same.
I’ve been reading as much as I can all the while trying not to cry
Looking forward to sharing / reading in this thread

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You will find so much helpful information and support here. My husband was diagnosed last year and we were completely overwhelmed, but I found hope, comfort and answers to so many of my questions. This is a journey we don't want to be on, but we're not alone. 💜

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Medical treatment has come very far in the past few years! Plan for not one, but multiple opinions on your case. Treatment is not “one size fits all”. Get to a Center of Excellence for at least one of your consults. Very very important!!💜.

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Diagnosed with pancreatic cancer in February and then going through chemo ever since. I’ve been looking for options and hearing about a doctor Hopf At the hospital in Arizona involving clinical trials and such. I live in Florida and I’ve been being treated at Mayo in Jacksonville Does anybody have any insight about this doctor or clinical trials in Arizona? Thanks

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I was diagnosed with Stage 2 Pancreatic Cancer…… my grandfather and an uncle had the same.
I’ve been reading as much as I can all the while trying not to cry
Looking forward to sharing / reading in this thread

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Correction: I put my cancer at the forefront of my battle and diabetes at the back.

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Profile picture for bwquartertide @bwquartertide

MD Anderson Cancer.
Jacksonville, Fl.

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To bwquartertide,
Sounds like your mom is in a good facility. When you say your mom continues to lose weight- is she still at a weight that would be considered normal for her age and height? You will lose weight as a result of surgery. Due to complications (a leaking pancreatic duct and consequently no real food for about 4-5 weeks) I was on the verge of emaciation and almost not able to receive chemo after 2 cycles of chemo. Also lost weight trying to keep my blood sugars in the numbers endocrinologist was looking for. Following a long-term survivor/fellow diabetic’s advice I began to put my diabetes at the forefront of my battle and eat most anything. I gained almost my pre surgery weight back at 154 and I’m 5’4 and 66 years old. I’m losing a bit weight now (ok’d by my oncologist for just 10 pounds). I still feel weaker than I did before I ever became a stage 4, but you learn to adjust. Continue her mild exercise IF her dr approves it, even if it’s just riding a recumbent bike. I wish you and your mom well in your journey.

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Profile picture for marienewland @mnewland99

Where is mother being treated?

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MD Anderson Cancer.
Jacksonville, Fl.

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Profile picture for marienewland @mnewland99

Happyjack,
I also feel like I was able to do many things I liked when I was young and healthy; although a broke college student for many years, however with income from sale of my home I have a bit to splurge now. I typically stay away from fat just because it’s so unhealthy. I did go on Creon for about 6-7 months after my surgery, but I no longer take it now. Protein shakes are a great resource following chemo sessions when I don’t feel like eating any heavy type foods. I buy my own vegan protein, almond milk, and Hersheys powder cocoa and 3 ice cubes and blend. I like to make a lot of my own food since I know it’s free of most additives and preservatives. I try to drink 1 shake per day but if I don’t , I’ll eat eggs and low sugar Chobani yogurt to try and get my share of protein for the day.
I also wish you much more quality time to spend with your sons and hopefully for a cure!

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Fat is required for us all. I do agree that a lot of us, and me included, do eat more than we require and the fat that is not as good for us. I like it all. Meat lovers pizza all the way to olive oil egg white veggie omelet. And even a fresh salad dry with no dressing, and then back to Hog wild for BBQ. I take no fat Greek yogurt and add unsweetened apple sauce to it for a no fat breakfast with skim milk and toasted oats cereal. Then every once in a while, have bacon and eggs with potatoes and biscuit and sausage gravy. We do need fat and the Mayo Clinic provides a more specific range: 44 to 78 grams of fat per day for a 2,000-calorie diet2. And I love olive oil for chili and pizza I make. Had I not been able to digest waxy veggies with vitamin K my cancer would not have been found. They would still be telling me I was not digesting fat and getting the nutrients I needed from fats just because I was old. Again, the key part is that we need nutrients from fat.

I do now have a surgery date of July 12th for the Whipple. I hope that afterwards I will be able to get away from the Creon as it is expensive. And it does not work as well as I think it should.

And I do wish for a cure for all cancers. Take care and best of luck to everyone going forward with this.

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