Pancreatic Cancer Group: Introduce yourself and connect with others

I was diagnosed with stage 3 in Jan 2020 but was able to have Whipple surgery followed by chemo. During that time I felt like I was actively fighting. I experienced a real struggle with negativity as I approached the end of the physical fight. It took a while to change my thoughts to more positive ones - and on occasion the negative ones still manage to surface. I still have sleep issues - I guess your brain will still process all thoughts, good or bad. I try to focus on things I can control, Soren’s time with friends/family, do things I enjoy vs thinking of negative out of my control things. All the best to you!

At age 73 recently I was diagnosed with inoperable pancreatic adenocarcinoma. One of the hardest parts I'm finding is the emotional rollercoaster. My current circumstances are difficult, and not something I am capable of changing at present. Consequently, I'm looking for advice as to what methods others have used to deal with a lot of negative thoughts and emotions. These are significant enough to interfere with sleep.

I would prefer non-pharmaceutical interventions.

How have others dealt with this situation - just experience those negative thoughts and emotions? somehow put them aside "on the shelf?" or try to turn them into something positive?

Am I missing other alternatives?

Thank you. I am still learning all the lingo and so many different drug names, as I try to get my 'cup half empty' guy to think 'cup half full' since we found the PC at stage 1.

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.