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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?
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So sorry! I meant SBRT. It is very targeted, precise radiation to an area.
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2 Reactions@gamaryanne What is SNRT? I am also trying to learn all the terms. Recently read about Dendritic Cell Therapy after @stageivsurvivor posted about it
My saga is similar to yours. With one new lesion in liver I am considering SNRT alongside my systemic treatment which is currently Naliri.
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2 ReactionsI just got my diagnosis in October 24. Have been on chemo ever since. At first my ca. numbers were going down. They changer my chemo and now my numbers are going up. What to do next?
Discovered a tumor on my pancreas in 2006. Whipple procedure to remove the tumor, the gall bladder, 40% of my pancreas, and reposition the bile duct tube, on January 5th, 2007. Revision of pancreatic Cancer surgery, July 14th 2017.
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2 ReactionsHello, diagnosed August 2023, 12 folfirinox, 3 months gemcitabine chemotherapy. Liver metastases were destroyed by ablation operation.
Today it metastasized to the liver again.
I have no pain, I have not lost weight, my daily life continues the same. My doctor said your pancreatic cancer doesn't fit the book. Immunotherapy will start.
Does anyone have any other suggestions for treatment?
Translate : deepl
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1 ReactionHi,
I haven’t posted in a long time. Been over a year and a half since my surgery for pancreatic cancer. NET’S
I still cannot gain weight. Am on Lanriotide for matasis to my liver and lung and lymph nodes.
Taking 9 Freon a day at 36k units each. Anyone have any advice for me?
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1 ReactionHi, my child has stage 4 in the pancreas neuroblastoma cancer i need help ho to treat it ?
Not sure, Colleen, if I am posting in the right place. But 2 new items of interest to my peritoneal cancer (after the Whipple, etc in 2024) have gotten my attention. First, cachexia, also known as wasting syndrome. I keep telling my doctor and PA my weight is dropping significantly (99 to 90 in about 8 months with no chemo involved); I ran across the term cachexia reading my stock Pfizer's recent news--they are working on a drug. In further reading, it fits me frighteningly close. So I am reaching out to our support group to find any help; I realize this is self-diagnosis but I have a problem as I have a good appetite and I never miss a meal or a snack and had gained back about 10 pounds since my Whipple 2 years ago.
The doctors are looking into a bacterial infection in my stool as I do have some chronic diarrhea, like most of us after treatment. But that brings me to Item #2 (appropriate): I now have a "poop test" sent home with me that might indicate a problem. I can only hope this is my problem, but I wonder how many of us in this group have NOT had this type of test which could help immensely if there is a simple solution to chronic diarrhea.
I should have titled this cachexia, but couldn't figure out how to do that. Carrie
Yes, we live in New Jersey.
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