Pancreatic Cancer Group: Introduce yourself and connect with others

Links?
Thank you for the advice.

Here are two links to high-volume institutions for treating pancreatic cancer. The first link is to National Cancer Institute Centers of Excellence. The second link is to National Pancreas Foundation recommended Comprehensive Cancer Centers.

For treating my stage IV disease diagnosed in 2012, I knew I was going to have to travel to an NCI designated center of excellence to survive my diagnosis. Anything less than these centers do not have the experienced multidisciplinary teams for effectively treating this difficult cancer. The best decision I made was selecting a high-volume center and traveling for my treatment.

3 hours away is a drive, but it’s worth it. I have flown to Johns Hopkins, honor health institute in Arizona and other places for opinions each time I am at a crossroads with this disease. Right now, I am in a clinical trial and my tumor marker is normal!

The first year of treatment is disruptive in almost every sense of the word. But doctors and nurses are there to make it as easy as possible for you. Also, please consider that clinical trials should not be the “dessert” after standard of care treatments. Often they should be the main course. Be sure to bring this up and ask questions. Also, don’t just visit with oncologists. Begin your treatment but get scheduled with surgeons and decide who you will trust when your body is ready. Dr Trudy at Mayo, Dr Evans in Wisconsin, Dr Abdalla in Atlanta. There are great ones that focus only on liver and pancreas!

Don’t know what a Pancreatic Center of Excellence would be in my area. As I live in a very small town and most of the better care would be in Minneapolis Minnesota. About 3+ hours away. Am in contact with PanCan and am confident that they will be able to provide with options. Take care and I look forward to hearing from people here who can provide me with information that I am desperately seeking. Thank you!

Thank you. And I’m surprised that you have stage IV and are still treating your disease. I have reached out to PanCan already and they gave me some excellent advice. Yes I agree with them and you for a second opinion. I will be working with them as well as my care team. I’m being overwhelmed with appointments and information etc. are you working with PanCan? Can you tell me about your experience with them? Good luck!

mchris327 - Listen to the good advice from mayoconnectuser1 and gamaryanne, read and become informed about all aspects of pancreatic cancer and its treatment(s), prepare for a multi-faceted slugfest, and be strong. May you have the support of family and friends. Best wishes. Onward.

(So says this old guy diagnosed 18 months ago with a disease we unfortunately have in common. I've lived longer than predicted and I feel pretty damn good!)

I was diagnosed October 2022. Went through 12 rounds of Folfirinox And 15 rounds of Radiation. New tumors were found in February 2024 and I went through Cemcitibane and Abraxine. I couldn’t tolerate it so Dr put me on Lumikras. I’ve been on it since July and pet scan last week shows the tumors are shrinking! It’s an experimental drug used for those with genetic mutations KRAS And G12C. I’m pretty excited!

mchris327,

Please immediately go to a pancreatic center of excellence. You only get one chance - do not remain with local care - it is not equivalent.

Hello mchris327,
Am sure you are in shock. It’s a difficult diagnosis to accept, esp. if your symptoms have been minimal.
I was diagnosed almost 3 years ago stage IV and I’m still here! Be encouraged!!

But-no matter how much you “like” your doctor you must have second opinions. From a pancreas center of excellence. Find pancan.org and call them. They can direct you to the closest location.

There are great things finally happening with this disease. But you must get to the right people! Pray that God leads you to them. He will!

Hi allow me to introduce myself mchris327. I’m diagnosed with pancreatic cancer yesterday. So overwhelming! To say the least. What next? PET, radiation, chem and surgery. I live in a very small town ( unincorporated 250 +, and that two hundred and fifty! What next? No know cancer besides my brother with liver cancer. He’s been struggling with it for quite a few years. I do have Cirrhosis but not liver cancer. Don’t know what stage my cancer is, but have read that normally not diagnosed until you have symptoms which could mean your cancer is beyond stage one. And info would be greatly appreciated. And I have to say I’m sorry that anyone has to endure this disease.