Pancreatic cancer relapse

To clarify here, Dr. Christopher Wolfgang is an outstanding surgeon but not the world expert. In the US, there are four outstanding Whipple surgeons who take on the more complex vascular-involved cases because they have vascular surgery skills having trained as liver transplantation surgeons. They are Mark Truty at the Mayo Clinic in Rochester, MN; Douglas Evans of Medical College of Wisconsin/Froedtert Hospital in Milwaukee, WI; Christopher Wolfgang at NYU-Langone in Manhattan and John Chabot who has done over 2,700 Whipple procedures in his long, storied career. It was Dr. Chabot that opera star Luciano Pavarotti selected to do his Whipple at Columbia Presbyterian Medical Center-the site where the Whipple was first performed. It says a lot when Pavarotti having a jet at his disposal and money to travel anywhere in the world selected John Chabot to do his Whipple.

Another top Whipple surgeon who deserves mention is world-renowned Daniel Cherqui who was recruited from Paris in 2010 to come to Weill Cornell Medicine to build the Hepatobiliary Department offering expanded liver transplantation and Whipple procedures. Cherqui was one of the three pioneers to develop live liver donor transplantation via laproscopic method for which he is noted. In 2012 when he performed my Whipple surgery with vascular involvement, he didn’t hesitate to continue the surgery. It required a portal vein resection. And despite the tumor not only having penetrated my portal vein, it had been seeding my liver with metastatic cells that first became detectable one week post surgery. At the time he performed my Whipple, Cherqui had done over 1500 Whipples and is now in the neighborhood of where Chabot is.
https://hbsn.amegroups.org/post/view/professor-daniel-cherqui-my-experiences-with-laparoscopic-liver-resection

These posts and people sharing their knowledge of this disease and treatments is very helpful! I get a little confused, however, wondering if I need to be more proactive. Though things are going well now, I want them to continue going well and want to be around for a long time. I am 71, until 6 months ago, I was healthy and fit - hiked the Grand Canyon last year, and other places out here in the southwest whenever possible. Diagnosed with Stage 1, head of pancreas, last January. Had 5 rounds of Fulfirinox, then Whipple, recovered from this without any unexpected problems, now back for 7 more rounds of the Fulfirinox. Surgeon was very happy with the surgery, clear margins, mass not attached to anything besides the pancreas, nothing seen anywhere internally, and testing of lymph nodes, no CA there either. I guess my biggest problem has been eating and keeping weight on. Everything tastes so funny, and not like I expect it to. But I am eating! I should be gaining, right now staying steady, so it could be worse, but I don’t have an extra ounce on me - like just about everyone dealing with this.
I guess if things start going south, I will look into the many recommendations here - I have not done much, no second opinions (I liked the surgeon, all he does is the Whipple procedure, and our hospital system here - UC Health, Colorado - though not Mayo or any other highly touted medical organization - seems to know what they’re doing). But then I worry that I am just not informed enough and should be looking into options (immunotherapy? Clinical trials?) and doing more.
Not having any problems now, maybe I need to relax and research more if/when something concerning occurs. Thanks again, for all the info and thoughts fighting this disease.

@katieliz
First, congratulations on a clean slate. Stay active, stay involved and load up on your protein intake from various sources. Some carbs too! You should be working with a dietician with your surgeon to get you back on track and keep those muscles strong.
This is a sneaky cancer. Be grateful for being termed NED but be sure they keep you on a 3 month scan routine and know your genetics. If they begin to see signs of a recurrence, it will be of great help to match your tumor mutations with the most accurate treatment.
Consider it a chronic disease that you must stay on top of. But definitely get out there and live your life!
I am looking at a bike trip in Chile for December, although I am fighting a recurrence in my liver. Plan, pray, and go! 💜💜

Thank you. I just want to not miss something I should be doing, as you never know.
Have fun on your bike trip!

I feel the same as you. I feel great. Actually have never had a symptom before as mine was discovered incidentally but pressing on my pancreatic duct so recommended it come out and found it had spread to one lymph Waiting on next steps but oh yeah I’m going and doing as much as I can while I feel well. I have a little weight to gain but not too much. I’m 64 and another new grandbaby last month. Amazing what a burst of happiness can do. It kept me focused to recover from my surgery. All the best to you!!!

Thanks, and I agree! 3 days ago my oldest son (I have 3, ages 48, 46 and 43) called me with phenomenal news. He and GF are expecting! Phenomenal in that I had just about given up on thinking I’d ever be a grandma (I turn 72 next month), none of the boys have even been married, and all of us are getting older. My son will be 49 when he becomes a dad - but he is ecstatic about it, and it’s about time anyway🤣.
So it was thrilling news for me, I am over the moon! And a super boost to my spirits!

Ooooh congrats!!!! Such a great feeling!!! She’s exactly one month today and we are taking her on a flight tomorrow! She’s going in someone’s pocket!! Mummy is in a wedding. So Grandma is babysitting! Wish us luck! Haha. All the best! This puts life in perspective doesn’t it? Enjoy the build up to Grandmahood. I truly believe the heart can make such a difference to our physical health! Mine is the reason I recovered as fast as I did from my surgery hands down.

One month - you’re brave! But sounds like you’re needed.
My son lives in Philadelphia, we live in Colorado and I texted him to let me know if/when a shower is planned because I’d love to come. He responded that’s fine, but didn't I want to make the trip once the baby’s here?
I wrote back - ‘I can make more than 1 trip!’
I can’t wait - have fun on your venture!