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Pancreatic Cancer Group: Introduce yourself and connect with others
Pancreatic Cancer | Last Active: 1 day ago | Replies (2398)Comment receiving replies
@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.
Replies to "@castell You are incredibly lucky! Thank you for posting as more people need to be aware..."
@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 .
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@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