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.
I was diagnosed with stage 1B in early May of 2025. I have gone through 12 weeks of Abraxane and Gemstar chemo. My CA119-9 was at 360 in May and is now down to 80. I'm curre3ntoly being treated at Scripps in San Diego. My tumor has partially encased the blood vessels in my pancreas, so I was told I was not a surgery candidate. My oncologist now recommends 5 and 1/2 weeks of radiation with once-a-week Gemstar chemo. He said this should give me a couple years of regression and when it comes back, they would do the 5-day radiation treatment with the linear accelerator device. I'm not sure what to do but am in conversations with Mayo, UCSD, UCLA in addition to Scripps. I now have very increased neuropathy from the Abraxane and have to take Creon before every meal. I'm 75 years old and in reasonable health. Not sure what to do at this point. Any advice or input would be greatly appreciated.
We cannot really give advice here, but perhaps offer questions for you to pose to help make your decision.
1) is Nanoknife a possibility? Why/why not?
2)can you curb abraxane to prevent further neuropathy?
3) why 5.5 weeks of radiation vs targeted proton or SBRT?
4) Will the type of radiation they propose potentially damage other areas in the region?
Take a look at surgeon Mark Truty at Mayo Rochester. From is online bio: "He is specifically sought out given his novel approaches to preoperative treatment of these tumors in order to improve outcomes after surgery as well as his willingness and technical skillset to offer curative intent operations for patients with more advanced tumors that other surgeons have deemed inoperable due to tumor involvement of critical blood vessels."
Thank you for the information! It's greatly appreciated!!!
Thank you for the information. I will ask these questions on this Tuesday when they fit me for a form for the radiation!
I was just diagnosed with early pancreatic cancer still waiting for the next step. Mine was found by accident. It was removed and since it was cancer they now say they have to open me and do further removal. What else should i expect? The doctors are talking and will call me back in a few days.
If it is pancreatic cancer, you should expect systemic treatment after surgery when you are strong enough for it.
I must say, your situation seems quite unusual in that they performed surgery and now are going back to get “what was left”(?). Or maybe you were having surgery for something else and it was discovered? If so, the current data seems to show better results with chemo first, then surgery. You might ask about that. If it is definitely Pcan, pls do get a 2nd opinion.
There can be many twists and turns with this disease. You need people, like Mayo, that see high volumes of these cases.
I’ve had my pancreatic cancerous tumour removed. (Neuroendocrine) and no chemo. I wish people would say what type of tumour. Or maybe I don’t get it. There are different kinds and each has their own treatment. Every situation is different. We are not doctors.
How was it found by accident? While having another operation? Mine was too looking for something else on a scan tho. So when they went in, they removed everything but just one time .
I went in to remove what was thought to be a stone in my bile duct by ERCP. Once there no stone found but a mass on head of my pancreas. He removed it and thought it looked good and not cancer however it came back cancer.