Pancreatic Cancer Group: Introduce yourself and connect with others

Thank you. I did ask about a PET scan and both the oncologist and surgeon said that for PC, the PET would not necessarily be of benefit. Of course, I may be translating the info wrong, but that is what I walked away with, and no scheduled PET.

You might also ask for a PET scan if not already completed.

Hi,
I am a stage 1b pancan patient. I had a distal pancreatectomy because of concerning cyst, and cancer found after resection. I have had 9 rounds of Folferinox and no CA-19 tests since post surgery, back in August. My case is different than your husband, but my doctor doesn't seem to think the CA test can provide 100% reliable info in mid-treatment, as I asked him once. I was on three chemo agents, but the Oxaliplatin was dropped, due to continuing neuropathy. Every case is different, even with some similarities. I don't know if any of my experience is helpful, but I think it's good to get second opinions from other docs. Best wishes.

Hello there. Husband diagnosed in mid-Oct 2022 w/Stage 1, borderline resectable PC. Always looking for silver linings in life, so grateful found at Stage1. Been thru 5 rds of chemo but last two CA19 tests trended up with last one being at 1800. Doc now changing from 3 drugs to 2 and concerned that there is more cancer than what they have seen in CT, he also has increased pain in abdomen. But, he also has another issue in ab that needs attention, not related to cancer. First post here, anywhere as a matter of fact. Treatment is not at Mayo but we have a call in for a 2nd opinion at Mayo. Not sure what I am looking for as I type this.

@tammykl, hi , I was diagnosed Dec 2019, I've had chemo twice, radiation, ( stage 4 ),now on a clinical trial, main tumor in the surgercal bed, 3 other spots in my abdomen. All stable as of January 2023, I have alot of back pain, tired, light headed, can't gain weight. Other than that, I'm doing pretty good.

I was diagnosed Feb. 1 2022. I've had chemo, SBRT radiation and robotic surgery to get the Whipple procedure. However, the surgeon discovered that I had carcinomatosis and that the tumor had sprayed itself all over my peritoneum and he didn't do the Whipple. He took 6" of my intestine and created a bypass over the top of my pancreas so I could digest food in the coming months. I asked him how much time I had and he said 6 to 8 months. He said chemo would add about 4 months to my lifespan. I feel good and not experiencing any pain. I had PET scans and CT scans and the carcinomatosis didn't show up at all. I had been diagnosed at Stage 1B. Does anyone know if immunotherapy can keep the cancer from growing?

whiled,

Any Whipple is difficult, and doing laparoscopic Whipples is very difficult. Vascular/arterial involvement is not uncommon.

That said Truty and Kendrick at Mayo are two of the most experienced in the world.

Thank you for your reply Kathy
I will keep you in my prayers as well

Hi everyone. My mom was diagnosed with pancreatic cancer in July 2022 and was not eligible for surgery at the time due to SMA encasement, so she was recommended to start chemotherapy. She just had her 12th infusion and will have her 13th and last infusion in two weeks. Her CA 19-9 numbers peaked at around 480 and have since come down to 18. We are heading up to Mayo Clinic in less than a month to see Dr. Truty, but I am super anxious about the consult. Has anyone here gone to see Dr. Truty for cases where there is vascular/arterial involvement?

Hi love,
No, I've had no surgeries, radiation, however I was on the lanotride shots for a few months at 120 ml off for 2 months bad reaction, was taken down to 20 ml. No longer on them. I don't take enzymes, but I'm very careful as to what I eat. Look up joe tippion
You are in my prayers love