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.

Ellen, how large is your nodule and is it only one? I have several but we are doing chemo. They have not considered removal. How did your team come to this decision? Good luck on all counts.

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@artgirl2

Hello: If it would help you, I can certainly share it with you. I have been thinking about writing more about it for quite a while. My recovery from the Whipple was also very slow. I was so weak and could not eat much. I can share with you what I did and/or how I coped, if would help.

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I had a pancreatectomy in October of 2020. The surgeon also removed my gallbladder and spleen. I’ve lost 40 pounds and I consume lots of calories. Unfortunately I have trouble retaining the calories. That said I have made progress and look at my situation as the new normal. I try and workout daily(slowly so as not to burn more calories). Weight lifting and strengthening your muscles is helpful and gives me energy. Enjoying walking in nature is also uplifting. I am thankful to still be alive after being diagnosed with pancreatic cancer in 2019. Next week I am having a suspicious nodule removed from my lung. When you have or have had cancer the scans, bloodwork and suspicious nodules are part of a new normal too. It’s a rough road, but one full of great people and caregivers.

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@colleenyoung

Thinking of you today, BeckyLynne. I'm sure you have much to consider after your surgical consult. I look forward to hearing what you learned when you're ready.

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Hey, So I am scheduled for surgery next Monday the 20th. the doctor still feels he can get it out unless when he opens me up he sees spread and he will stop the surgery. This has me a little stressed of still not knowing if the surgery will proceed. the 2nd CT scan showed no spread so I pray that is the case. Thank you so much for your concern and thoughts.

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@caryns

Hi @artgirl2
It would be a blessing for me to hear your story. I have been slowly struggling through recovery from the Whipple the past month, which had me in hospital for 21 days due to unexpected complications. It helps to know others have survived and even thrived after this when it seems so difficult at the moment.

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Hello: If it would help you, I can certainly share it with you. I have been thinking about writing more about it for quite a while. My recovery from the Whipple was also very slow. I was so weak and could not eat much. I can share with you what I did and/or how I coped, if would help.

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@colleenyoung

I can imagine how concerned you are Fogel. The symptoms of pancreatitis are similar to pancreatic cancer. I will be thinking of you on Monday. Will you return to let us know what you learn?

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The best to you for Monday. Ask them to do a CA19-9 blood assay which they use as a marker for Pancreatic Cancer. Whatever your diagnosis, face it with positive mindset and readiness to do whatever you need to do to get better. Let us know your diagnosis and use us all as sounding board. Get a support system ready to help you, family, friends. It is so so helpful. I have had wonderful friends backing me on my journey and it helps to keep me positive. My family is always there.

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@caryns

Hi @artgirl2
It would be a blessing for me to hear your story. I have been slowly struggling through recovery from the Whipple the past month, which had me in hospital for 21 days due to unexpected complications. It helps to know others have survived and even thrived after this when it seems so difficult at the moment.

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I had a great experience, if any surgery is great. My surgeon had done open surgery as he liked to really see what was going on and he had me in recovery in less than 4 hours. I had a spinal block that allowed me to walk more comfortably the next morning and was sent home in 5 days since I met all the requirements for release. Did great for 2 weeks and then major intestinal cramping and gas as things healed. This lasted for a good 4 weeks and on my revisit with my surgeon, he assured me this was normal and it would get better and it did so in the next week or so. I ate a lot of peanut butter and saltine crackers, a couple at a time, to get protein without a lot in the gut. I also drink high protein, 30 grams, once or twice a day. Fighting metastasis to the liver right now and fighting is good for the soul. I do everything I can to enjoy life with family and friends. Keep a positive outlook,, talk frankly with your medical team and move forward. My Nurse Pract. suggested that use Galviscon for cramping and gas and it helps me a lot. Drink lots of water (which I am bad about doing) and eat what you can. Talk with this group. I am sure that others have good suggestions as well. Take care and smile, even when it hurts.

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@colleenyoung

I can imagine how concerned you are Fogel. The symptoms of pancreatitis are similar to pancreatic cancer. I will be thinking of you on Monday. Will you return to let us know what you learn?

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Thank you!
If anyone else can give insight, J would appreciate it!

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@artgirl2

Hello: I am a pancreatic cancer survivor. The adenocarcinoma of the pancreas was found by accident. (A very long story.) Mayo Clinic truly saved my life. Dr. Chari was my pancreatic specialist. Dr. Farnell was my surgeon. It was a very long recovery. I was given a 6 month prognosis. It will be fifteen years since the cancer was found this coming January. Yes, I am a pancreatic AND breast cancer (two types) survivor. I have finally decided it might be time to talk about it. Thank you for listening. I wish everyone the best.

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Hi @artgirl2
It would be a blessing for me to hear your story. I have been slowly struggling through recovery from the Whipple the past month, which had me in hospital for 21 days due to unexpected complications. It helps to know others have survived and even thrived after this when it seems so difficult at the moment.

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@colleenyoung

Artgirl, it is so important to hear stories like yours. Fifteen year survivor of pancreatic cancer is amazing in itself. But did I understand correctly that you’ve also had 2 types of breast cancer? Did you have breast cancer after your pancreatic cancer diagnosis?

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Yes, that is correct.

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@fogel1960

Hi, I have been in & out of the hospital the entire year for weeks with acute Pancreatitis. As of now, zero appetite, list 30 lbs in 7 weeks, sever upper abdomen pain that radiates to back, diarrhea every day.
My recent catscan shows abnormal lymp nodes, bilirubin in urine, endopathy. But no jaundice. Im afraid it’s Pancreatic cancer. I have an appointment on Dec 13. What does anyone think I am dealing with. I had my gallbladder out yrs ago & never smoked or drank

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I can imagine how concerned you are Fogel. The symptoms of pancreatitis are similar to pancreatic cancer. I will be thinking of you on Monday. Will you return to let us know what you learn?

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