Pancreatic Cancer Group: Introduce yourself and connect with others

@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.

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.

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.

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

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.

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.

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?

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!

ajh,

My sister is at month 12 from diagnosis. She was borderline resectable, but even with neoadjuvant chemo and radiation managed by Mayo Rochester (constant folfirinox chemo therapy followed by radiation to shrink tumor) the cancer spread before a Whipple could occur.

First decision is - chemotherapy or not?

She did not do things she wanted to do, mainly because there was a chance of life extending surgery. If she had not believed there was a chance of life extending surgery, she likely would have integrated some chemo approach with travel, relatives, whatever made her happy.

A decision could be made to forgo chemo and enjoy life as much as possible.

I'm trying not sound defeatist, but after spending months organizing my unmarried 65 yo sister's estate and financials as she declined, I think I would advise in depth, careful estate planning, simplification of financials including automatic payments and deposits, investment changes to better provide for children, etc. Trust, Will, DNR, Healthcare Surrogate, Durable Power of Attorney, specific instructions, user name and password listing ... coordinate everything.

Stay BUSY, enjoy life to fullest extent possible.

I was diagnosed stage IV Adenocarcinoma 11/2020. Shocked and stunned as I was very healthy, working full time and moving a mile a minute! After the shock and sadness, I remembered that God did not say we would not have pain in this world. But He does give us tools to manage it. Would I choose fight or flight? What would my children and friends learn from this? I chose fight. With a second opinion we mapped out a plan. I jumped in it and kept my life going forward. My tools to fight:
1). 4 extremely deep long breaths several times a day
2) never sit longer than two hours from 8-7(except during chemo!)
3) do something every day that is about someone else(write notes, say hi, offer help)
4) get your affairs in order
5) eat your protein, listen to a dietician to fortify yourself
6)Be still with God each morning and give thanks
Be sure to get a second opinion. My attitude to be one of the 12% has led my team of doctors to think “out of the box” for me and I am so grateful. I am still working, volunteering and managing my treatments and RESTING. Don’t give up!