Pancreatic Cancer Group: Introduce yourself and connect with others

My husband was diagnosed with pancreatic cancer quite by accident in November 2024. The first sign of anything amiss was a severe spike in his A1C in October, along with a sudden diabetes diagnosis. He'd been losing weight without even trying, as well. In hindsight his doctors missed that marker of pancreatic cancer. He had an annual follow-up CT for a kidney cyst (benign) and the radiologist found the pancreas tumor(s). He was referred for an EUS biopsy (PET, other tests) that confirmed the cancer was active. He had 8 rounds of chemo, then surgery, then 4 more chemo. Scans after that showed no recurrence, and CA19-9 (normal scale 0-37) score dropped to 4.86. That was August 2025. November scan was clear, but CA19-9 had gone up to 21.56. Dr was unconcerned. February scan showed some new lung nodules (with a couple that had grown since the November scan). What? Radiology report said 'metastatic disease'. We brought this up to the dr but she didn't think it was worrisome. I (wife) pushed further until dr scheduled a PET scan. Pet showed lymph node activity in addition to small lung node. Latest CA19-9 is 37.67. Clearly something is lurking. Stay tuned. I am already exhausted and my husband is very concerned.

@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!

@mnewland99 yes I do the blood test that tracks circulating DNA. My question is how did they determine the mutational change you mentioned? Was that info also provided by your test?

If so, I should ask for Guardant. I am doing the Signatera CTDNA test quarterly currently

@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!

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

@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 .

@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

@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.