Pancreatic Cancer Group: Introduce yourself and connect with others

@icelander19
I had Whipple almost ten years ago. Surgical pathology report showed two positive lymph nodes, one at the hepatic artery (usually a bad indicator).

No complications. No recurrence. Six months of chemo after Whipple. Use Creon with every meal. Everything worked out surprisingly well, despite a grim outlook at times.

Best of luck -- we all need it.

CG

Hi
I was diagnosed with having IPMN following food poisoning while on holiday. Had pain above my stomach and went to see my GP. Had US, CT Scan and MRI and it shown IPMN and dilated Main pancreatic duct. I have no symptoms now beside a bit of discomfort now and then. The surgeon recommended surgery, Total Pancreatectomy. I am undecided. Would like to know anyone who had Total Pancreatectomy how the are copping.

@icelander19 Awe, thanks so much. Appreciate all your tips and ideas and will adjust to routine as time goes by. Will just live in the present and take one day at a time for now. Prayers that you continue to do well and thanks again for your help.

Hi
I was diagnosed with having IPMN following food poisoning while on holiday. Had pain above my stomach and went to see my GP. Had US, CT Scan and MRI and it shown IPMN and dilated Main pancreatic duct. I have no symptoms now beside a bit of discomfort now and then. The surgeon recommended surgery, Total Pancreatectomy. I am undecided. Would like to know anyone who had Total Pancreatectomy how the are copping.

@castell
You are incredibly lucky! Thank you for posting as more people need to be aware that positive results are possible, however, I think it would be important for others to know your mutations and whether they were germline or somatic, and how much of your pancreas was removed. Everyone is different, but the scientist in me would like connect the common denominators for your success of 10 years especially since you had metastasis to 2 lymph nodes. Please share which chemo drugs you were on. I had the distal pamcretectomy with 75% of pancreas removed and total spleen removal. Metastasis to 1 lymph node. I also had chemo (folfirnox) for 6 months. Biopsy of pancreatic tissue revealed KRAS12D, TP53, and ATM base substitution of unknown significance. I believe there was possibly hepatic artery involvement though that soft tissue area wasn't identified until 2 months after my surgery (it's stable now). My latest Guardant 360 or liquid biopsy shows only TP53 and SMAD-4 mutations; no more KRAS or ATM, surprisingly. My surgery was in tne last quarter of 2022, and I've been fighting its metastasis with every modality that I can think of. I feel ok, but it's spreading in the peritoneum and possibly liver again. My next step is try a drug that might be able to fight the CLD18.2 protein I have that's often associated with the potential for stomach cancer which may come from the peritoneal carcinomatosis. I'll post if I'm accepted into the trial for CLD18.2. I wish you continued success and hope that your response may help others.

@castell
You are incredibly lucky! Thank you for posting as more people need to be aware that positive results are possible, however, I think it would be important for others to know your mutations and whether they were germline or somatic, and how much of your pancreas was removed. Everyone is different, but the scientist in me would like connect the common denominators for your success of 10 years especially since you had metastasis to 2 lymph nodes. Please share which chemo drugs you were on. I had the distal pamcretectomy with 75% of pancreas removed and total spleen removal. Metastasis to 1 lymph node. I also had chemo (folfirnox) for 6 months. Biopsy of pancreatic tissue revealed KRAS12D, TP53, and ATM base substitution of unknown significance. I believe there was possibly hepatic artery involvement though that soft tissue area wasn't identified until 2 months after my surgery (it's stable now). My latest Guardant 360 or liquid biopsy shows only TP53 and SMAD-4 mutations; no more KRAS or ATM, surprisingly. My surgery was in tne last quarter of 2022, and I've been fighting its metastasis with every modality that I can think of. I feel ok, but it's spreading in the peritoneum and possibly liver again. My next step is try a drug that might be able to fight the CLD18.2 protein I have that's often associated with the potential for stomach cancer which may come from the peritoneal carcinomatosis. I'll post if I'm accepted into the trial for CLD18.2. I wish you continued success and hope that your response may help others.

@mnewland99
My Whipple was in 2016. I don't think it was standard then to provide information about genetic mutations. I did order genetic tests outside my HMO, and all I remember is that the results did not point to any changes in my therapy.
In my case, neoadjuvant chemo -- Abraxane and gemcitabine -- was very important. It reduced my CA 19-9 from 1300 to around 20. It was only ordered because I was borderline for the surgery.
I remember asking the surgeon how much of the pancreas he had removed; he said he didn't know as he would have to weigh it. At first I only used about one third of the dosage of Creon prescribed for me so I must assume I still had some functioning pancreas after the surgery. Now, at age 82, I think the remaining pancreas is producing less enzymes. (I have read that the typical Whipple removes about 50% of the pancreas.)

My pathology report states the specimen is "well differentiated" (good news) with "focal extra pancreatic extension" (not good news).

I had four months of neoadjuvant chemo with abraxane and Gemzar; after the surgery I had six months almost all only Gemzar.

I consulted an academic oncologist, now a full professor at the University of California. He said Metformin might help me one day -- I never pursued this, but you can look it up.

Good luck!

CG

@mnewland99
Wow! So that KRAS driver is gone! Hallelujah on that.
Question: I had biopsy last year to find if my mutations had changed. Unsuccessful. Did not take a large enough sample. Ugh
Is Guardant all blood based? If so I will order .

@joeseah
I would certainly get a second opinion. Surgery for IPMN appears radical.

@gamaryanne
Yes, blood sample only. It measures circulating dna in your bloodstream or cancer cells that are shedding or being actively eliminated from what I understand from the readings(I sure miss Markymarkfl being able to help us decipher through the scientific readings!