Pancreatic Cancer Group: Introduce yourself and connect with others

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!)

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!

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!

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!

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.

Links?
Thank you for the advice.

I concur that, with this cancer in particular, your best bet is to find a Center of Excellence if at all possible. I realize there may be barriers—time, travel, financial, etc.—but there are very good reasons to do it if you can. I don’t know where you live, but Mayo might actually be closer to you. And if you can get to Mpls there are regular shuttles to Mayo.

I get my care at MN Oncology (MO) in Mpls which is affiliated with Mayo Clinic in Rochester. Mayo is a Center of Excellence. My oncologist at MO works closely with the teams—and had trained—at Mayo. I like the arrangement. It’s like having on-going second opinions. So far, they’ve always been on the same page.

I was diagnosed in March 2023. That year I had 12 rounds of chemo (6 months) and a Whipple procedure. I was seen by my MO oncologist regularly (every two weeks) and had the treatments in Minneapolis. After my initial consultation with him we decided to make the referral to Mayo for the surgery. I wanted someone who does this surgery weekly rather than just a few times a year. So, I had the Whipple done at Mayo and saw a member of their oncology team whenever I was there for testing, consultation and/or surgery follow-up.

Since the beginning of this year I have had testing and seen an oncologist at Mayo every 3 months and see my oncologist at MO every three months.

Your treatment plan will probably be different than mine, but I wanted to give you a sense of what might be in the cards going forward and give you something to chew on. But I know you’ve got a lot to chew on already. Having a cancer diagnosis is a challenging situation.

I wish you all the best.

I forgot to paste the links to the NCI Centers of Excellence and the National Pancreas Foundation recommended Comprehensive Cancer Centers. Here they are:

CENTERS OF EXCELLENCE
https://www.cancer.gov/research/infrastructure/cancer-centers/find
https://pancreasfoundation.org/patient-resources/npf-centers-of-excellence/

Hello everyone, and thank you for allowing me to join this discussion. My journey with pancreatic cancer began in August 2023 when I received my diagnosis. Since then, I've been through 12 rounds of chemotherapy, specifically following the FOLFIRINOX (FFX) regimen. I later underwent 15 rounds of radiation using the Proton Beam at Mayo Clinic. The cancer responded to the treatment very well. In June 2024, I had a total pancreatectomy at Mayo Clinic Rochester, where I was hospitalized for about a month. I’m incredibly grateful for the exceptional care I’ve received from my team, led by Dr. Truty.

Currently, I'm still in recovery, which I understand can take a year or longer. I have good days and bad days but most days I don't feel all that well. I recently had my first 3-month check-up, and thankfully, the cancer hasn’t metastasized. While I'm still reliant on a feeding tube about 12 hours a day for most of my nutrition, as eating orally remains challenging, I can only eat about 1 - 2 small meals a day. It's also been difficult to get my blood sugars manageable with insulin due to the feeding tube.

I'm exploring ways to manage nutrition and comfort. I’ve been learning more about Creon dosages to help with digestion, and I'm also addressing neuropathy in my hands and feet with acupuncture and topical creams. Medical cannabis is another area I’m experimenting with, in tablet and gummy forms, to help with various symptoms. Additionally, I've started working with a psychiatrist to develop coping skills for this new chapter of my life.

I would also add that I have an incredible support system with my wife, children, and friends.

I look forward to learning from everyone here and I'd be glad to share insights from my own experiences.

If I may ask - Who was your surgeon at Mayo and what stage were you? What is your status now?