Pancreatic Cancer Group: Introduce yourself and connect with others

Hi Tammykl,

Can you please share which clinical trial did you participate?

thank you,
Richard Hsu

@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.

Is there anyone out there who was recommended to have a prophylactic Whipple or who has chosen to monitor their IPMN? I am 8mm main duct dilated for the past almost 10 years but was only told I have had this for this long, this past June. If you are monitoring, how long have you done this and is it via MRI. Some doctors I have spoken to say they have a number of patients with IPMN that they follow. Has anyone had the Whipple without pancreatic cancer? Thank you!

Good Morning All! I was diagnosed with pancreatic adenocarcinoma in September 2022 - Stage 2b with some apparent involvement of a couple of lymph nodes. The condition was discovered while being diagnosed for blood in my urine. A CT scan indicated a "spot" on the tail of my pancreas and I was immediately given the enzyme test which came back at just over 3000. The size and location of the lesion was confirmed by MRI. The size of the lesion was described as 3 x 5cm. I was referred to Emory University and Dr. Sarmiento who invented an endoscopic procedure for biopsy and eventual removal of the offending portion of the organ. The plan of action was to enter chemotherapy with the goal of reducing the lesion size for eventual removal. In November, I had 8 rounds of intense chemo with PALONOSETRON HCL, FLUOROURACIL, IRINOTECAN, and OXALIPLATIN. The results were not optimal...no reduction in lesion size but there was a small decrease in the enzyme assay. I've been moved to "palliative" care and have entered a second (6) infusion round of chemo with a completely different set of drugs - the names of which escape me at the moment!. I had new MRI imaging done in January and it's results indicated some small liver involvement. The small liver spot adjacent to the lesion became a problem when my surgeon indicated that I was no longer a candidate for the surgical procedure. As of today, I remain pain free and have never had any of the dire side effects of the chemo drugs. We are continuing treatments aided with lots of prayer that hopefully will further decrease my enzyme count.

Y90 is a targeted approach using nuclear radiation to a very precise area. It was used on an area of my liver with tumors close together. It stabilized them and scans saw necrosis in that area. That allowed me to have the pancreadectomy. It isn’t curative, so next they will remove those before they go rogue! As I understand it, the Y90 essentially ties off the blood flow through the area with nuclear particles. That’s my limit of understanding! Dig those toes in the sand! I plan to head to Southern California next week to do the same before surgery on the 20th😊. Don’t miss a moment of the beauty all around you!!

I love what you have shared. Right now my husband and I are in Playa del Carmen in Mexico enjoying a warm weather break from a very cold Colorado winter. I'm not sure what "embolized" means or Y90. Is that the year they were embolized? I would consider surgery or SBRT if a tumor (or small number of tumors) showed up. Or perhaps IRE, NanoKnife or Cyberknife. I'm getting a little out of my depth here in understanding which are possible in that situation. Please keep us informed about how things are developing for you. I'm so glad you are feeling well now!