Pancreatic Cancer Group: Introduce yourself and connect with others

Thanks, Colleen. Borderline resectable. FOLFIRONOX. CT 2-3 months. Whipple if tumor lifts away from blood vessels.

Hello @steffi2 , I am sorry to hear about your pancreas cancer diagnosis. I am a five + year survivor that worked with Dr Truty at Mayo, Rochester. His plan for me included Folfirinox, and then Gemcitabine/Abraxane, which was followed by radiation and then, surgery. I had a pancreatectomy on 10/23/18. I am cancer free and am fully recovered. I now wear a OmniPod 5 insulin pump and Dexcom G6 CGM. They communicate with each other and it helps me avoid blood sugar lows. You could check out my blog which is more for emotional support for those walking through a cancer diagnosis to healing: RitaAnn.org/blog Peace to you, Rita Ann

Thank you, Rita Ann. It’s good to know there are other paths to long term survival besides the simplistic plan offered to me.

That’s wonderful news kjrita! I always like to hear about survivors! Which mutation did you have? ATM, KRAS12D?

@sthakral, treatments can be harsh. Did your dad's doctors talk to your family about palliative care? Palliative can focuses on comfort and symptom management. Let me know if you want more information if you haven't heard of palliative care.

Hi Colleen,
Palliative care is what the doctor recommended and what we are doing. We are just trying to keep him as comfortable as possible. But he’s getting weaker by the day and needs assistance with everything. I know he hates that as he is used to being self reliant and active.

Hello,
My husband was diagnosed in April of 2023. We thought it was stage II at first but when they went in to do the distal surgery they found studding in the liver. They aborted surgery and he is fighting the disease with Chemotherapy. He was able to complete 18 cycles of FLOFIRINOX, 8 cycles of FLOFIRI, and has now transitioned to Gem/Abrax- first cycle today. His main tumor has remained stable this whole time, but he continues to get new liver spots. He is having a consultation for the Y90 procedure tomorrow.

I am always seeking out new information to help us prepare for all the ups and downs that have come with this diagnosis. I never have a dumb question anymore, not when it is about my husband's health and healing. This is such a scary disease, but we find there are so many positive stories around survival too, we seek those experiences out and it helps us keep our spirits and fighting drive strong.

I feel the exact same way, I'm never afraid or embarrassed to ask any questions as it relates to my husband's journey. Every single person here has been so helpful. This group has been a source of comfort and knowledge and I'm SO grateful to everyone.

This is so good to hear! I will look for your blog today.

So glad you are NED! And yes, these stories must be out there!!

Current protocol is chemo prior to surgeries unless disease is likely in pancreas only (scans, CT DNA tests, etc I was stage IV to liver. Many tumors there. After significant shrinkage due to chemo in both liver and pancreas, I was allowed Y-90 to liver which resulted in necrosis of the liver tumors and got me to a pancreadectomy. So far, one small tumor arose after in my liver which was removed after rounds of gem/abraxane.
Feeling good, working, on maintenance dose of Gem and watching scans and tumor markers closely. Until we have a tools that can turn off the mutations, most of us stage IV patients are in watch and “wack a mole” phase. Praying some of these phase 1 trials can move through and be a lifesaver for many of us soon. The vaccine is also very promising for some.
I am currently in watch mode for a small node in my lung. I panic, then I seek second opinions for data, make a treatment plan, then just pray and work hard loving everything around me in my life. Oh-and tediously setting priorities on each day to not get lost in the tedium of life and miss all that is good that I can maybe even still effect!