Pancreatic Cancer Group: Introduce yourself and connect with others

Hello,
I was diagnosed with locally advanced PDAC in July 2024, with an ~4cm tumor in the head abutting and encasing some vasculature. Symptoms were lack of appetite, fatigue, vague abdominal discomfort not rising to the level of “pain,” but generally feeling crummy. Docs originally suspected gallstones, but imaging showed otherwise. Started FOLFIRINOX in early August. Side effects from chemo (fatigue, temperature sensitivity, nausea, lack of appetite, diarrhea, hair loss) were uncomfortable but generally manageable. Genetic testing showed KRAS G12V mutation. Continued chemo through December, then open Whipple in January 2025 (remaining viable tumor .6cm) with reconstruction of the replaced right hepatic artery. Negative margins were achieved, only one of 22 lymph nodes examined had any cancer cells, and biopsies of two liver lesions seen during surgery were negative for cancer. Next scans suggested possible metastasis to liver, although surgical changes were also possible. Continued with chemo after surgery through mid-August, but doctor removed the oxaliplatin due to worsened neuropathy in hands and feet (total 18 cycles pre and post op). After scans in June, tumor board concluded NED, so August treatment was last treatment so far. First follow-up scans were clean, CA19-9 marker still well within normal, so hoping for continued good news. Although I still tire very easily and the neuropathy has not resolved, I walked a 5K turkey trot last week and the neuropathy is mostly not painful and doesn’t interfere with function except to make walking really uncomfortable much of the time. I’m extremely grateful for results so far, especially given the terrifying statistics that were the first thing I saw after the diagnosis.

Hi I’m Kathy. I was recently (Oct 31) diagnosed with pancreatic body PDAC, locally advanced with involvement of the celiac axis.

Chemo is the first plan…3 months of Filfirinox and then talk about surgery.

Can anyone tell me their experiences with this?
Thanks,
Kathy

@pcjourney25

What surgery are they talking about?

Best 💜

@azsunshine7 I asked him if it would be the distal (since it’s in the body) and he said, “At the minimal”. I asked if it was the Whipple and he said no. I suspect he means the entire pancreas (and its neighbor parts) since it is in the celiac axis and a couple of arteries.

For now, I’m wondering about the Folfirinox regiment. Does everyone take a temp pump home for a day? Does everyone have to go back day 3 to have temp removed?

@pcjourney25 Hi and welcome to Mayo Connect. Here is a link on how others experienced folfirinox.
https://connect.mayoclinic.org/discussion/began-folfirinox-treatment-have-a-few-questions/
As you will read, the experience can be quite different for everyone. For me, learning from other patients has been invaluable in dealing with the physical, mental, and emotional challenges of having pancreatic cancer. How was your cancer found? Were you having any symptoms?

@pcjourney25
I brought the 5FU pump home, and let me tell you, it was a bit of a hassle. I couldn’t take a shower or a bath while it was connected, and sleeping with the pump attached was tricky—definitely not the most comfortable experience.

But you know what? I got used to it. Just reminds me that this too shall pass. 💖

@tomrennie
Thank you for the link!!
I was having pain in upper abdomen. Mentioned to my doctor. Six months later the pain was worse and he moved to my back. I was losing weight. This time I was sent for CT and MRCP stat the EUS following week.

When I started losing weight and pain went to my back

@pcjourney25 hi Kathy. My cancer was in the head but encasing/abutting arteries. I got the same advice to do FOLFIRINOX then talk about surgery. The program I did was several hours in the infusion center day 1, take home a pump then come back day 3 for it to be removed and to get a shot to stimulate blood cells. I do suggest getting more than one opinion from experienced surgeons on the surgery front. After the neoadjuvant treatment cycles one surgeon was good to go and the other wanted to do radiation before considering surgery. I did have the Whipple. and thankfully it was successful including reconstruction of an artery.

@pcjourney25 I agree with you that a Whipple probably won't apply since it is in the body. Do you know the size of your tumor? Has it spread anywhere else other than the celiac axis and a couple of arteries? Was a stage given? Do you have any general concerns at this point?

Hello
I’m 2 years post Whipple surgery and doing very well. I started taking Creon for enzyme therapy a few weeks after surgery.
I had a Robotic/ laparoscopic pyloris preserving Whipple at Mayo Clinic in Rochester.
My surveillance with a CT and blood work are now twice a year.
I had 12 rounds of chemotherapy before surgery which didn’t do much to reduce the size of the 2c tumor. Post surgery I was at stage T1cN1