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.
Connect

Hello @73faith
I am sorry to hear that you have been experiencing these uncomfortable symptoms without any diagnostic answers. How long have you been experiencing weight loss and back pain?
Will you share what types of tests have been done so far to reach a diagnosis?
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2 Reactions@73faith I had pancreatitis symptoms, leading my doctor to order a CT scan to confirm, and that is when they found tumors in the pancreas and liver. I encourage you to request a CT scan to at least rule out one or both.
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4 Reactions@73faith I am no medical professional but my opinion Loretta is that you shouldn't wait to get to your doctor and ask for a CT scan. My wife had symptoms very similar to yours, saw a GI doctor who focused on GI testing and didn't order a scan. She finally went to her primary care doctor who ordered a scan that was positive for a mass on her pancreas. Six months had. gone by. So when her cancer was discovered, it was locally advanced (wrapped around the GMV and GMA vessels. I sincerely hope a scan will be negative in your case. Good luck!
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6 ReactionsHello, my name is Loretta. I’ve been very curious about my pancreas symptoms. I have not been diagnosed yet, but I have symptoms that I can not ignore. I’m losing weight, I’m at 109.6 , I used to be at 117. Back pain that don’t go away, really no desire to eat. I’ve been having problems with chronic pancreatic the last few years. Ate these symptoms leading towards pancreatic cancer? Any thought would greatly be appreciated. Bless you all. Loretta
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4 ReactionsHello @leileitun and welcome to Mayo Clinic Connect. Your sister is fortunate to have you supporting her during this time of treatment!
As you may know, the members of Mayo Connect are not medical professionals, just patients who offer support and encouragement, and also share our experiences with other members. As a result, we cannot help you with your questions about her chances for her targeted therapy.
If she can travel to the Mayo Clinic for a second opinion, that might be helpful. Here is a link with information about obtaining an appointment http://mayocl.in/1mtmR63.
How is your sister feeling? Has she had many side effects from her treatment so far?
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1 ReactionMy sister, 47 years old lady from Myanmar with advanced pancreatic adenocarcinoma with multiple liver metastasis, now in Bangkok hospital oncology ward ,on chemotherapy 3rd cycle (Folfirinox regime) , CA19-9 is > 4000 before 1st cycle, then >5000 before C2, then >6000 before C3.
Plan to take PET Scan before C4. Her results show that KRAS G12V mutation . No mutation in BRCA1 & 2. MSI Stable. Tumor Mutational Burden is Low,6 mut/Mb. Is there any chances for her targeted therapy?
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5 Reactions@tomrennie I believe gamaryanne is referring to "somatic" mutations which are picked up during a person's life, and "germline" mutations which you are born with. My acinar cell pancreatic cancer is definitely due to a germline mutation. From what I've read, the verdict is still out on which type of mutation causes more cancer. I would welcome any information to further clarify the issue. Mine as BRCA 2 and both my sons were tested and neither had it. My next oldest brother had the BRCA 2 mutation and is battling prostate cancer. My oldest brother did not have the mutation and had the whipple surgery for ductal cell pancreatic cancer 16 yrs. ago and is still with us. I wish I had the medical background to understand the issue further.
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3 Reactions@gamaryanne What is the difference between a gene mutation and genetics? I personally get confused about them. I think gene mutations are environmentally influenced where genetics are something you are born with? Am I close?
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1 Reaction@linda86 physicians say that this cancer is predominantly caused by gene mutations that happen during our lifetime, and not as much due to genetics.. however, it does happen. They could ask their Internal medicine doctor to have genetic testing done. It’s not invasive . Very easy. It won’t say “pancreas cancer” but it will show if they have genes that make them predisposed to GI cancers (or others)
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2 ReactionsNot that know of. @tomrennie
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