Hello Breki,
I am a 65 year old retired psychologist and I can relate to a great deal of what you are saying. I am new to this group so this is also an introduction. I was diagnosed in April 2021 due too odd symptoms with dark urine and light floating stools, followed by developing jaundice. I had a speedy diagnosis, all in one day, from taking to my PA, who noticed bilirubin in my urine, blood tests and a CT scan revealing a 2 cm tumor on the head of my pancreas all on April 21, 2021. Quite a shock. The University of Colorado Health System sprang into action and in 5 weeks I had a Whipple. I researched alternatives thoroughly before making the decision to go forward with the surgery and felt it was my best option. I was diagnosed at Stage IIB, 3 of 28 lymph nodes involved, no metastasis. R0 margins after surgery.

After recovering from surgery I did 12 sessions of Folfirinox which I tolerated better than most do. Chemo was from Aug 3, 2021 to January 25th, 2022. I just passed the 1 year mark of ending chemotherapy. There was a residual diffuse area of concern for potential early recurrence that I had SBRT radiation for in April 2022, after completing chemo. Fortunately no side effects. It was 10 sessions total. No therapy since that time. Labs have been normal and I've had two ctDNA tests (at my specific request since it is not standard in approved protocols). Both were negative and scan has shown no change. My last follow-up was Oct 27th, 2022. I recovered completely from surgery, chemo and radiation and have felt 105%, felt normal energy, and living life fully and happily. However, my last test two weeks ago showed increases in CT19-9 (30s to 171) and CEA (from 1.4 to 4.5, same as before surgery.)

Major concern for potential early recurrence. Scan is unchanged, which is good and I'm waiting on ctDNA results to get the complete picture. Where I resonate most with you is the quality of life issue. My doctors have been clear regarding my priority being quality of life and very respectful with respect to outlining my options. If all else is stable, we will watch and wait, but if ctDNA is positive this time I am considering an immunotherapy trial of ELIl-002 at UC Hospital Anschutz (Denver) where I have received most of my treatment.

I would be very reluctant to undergo any more chemo. It was very hard and depressing even though I bounced back between treatments and fared better than most. My biggest concern is that outcomes are generally very poor to dismal and my quality of life for the past year has been excellent, so I might choose to ride out the rest and just keep quality of life uncompromised for as long as possible with palliative care if needed (not needed at present). Or I might do the clinical immunotherapy trial, which is likely to be less intrusive and debilitating than chemo, though it is impossible to know for sure.

Right now I am doing research and may reach out to Mayo for a second opinion on my options if the ctDNA is positive or scan changes. I am living my life realizing I very likely might only have 6 months to a year to live, but that I might also be among those who make it through that small keyhole of survival. Like you, quality of life is a key concern, but treatment has given me a wonderful additional year of life fully lived, so I really don't know what I might choose to do. Your situation is more dire than mine, yours being inoperable and Stage 4. But our concerns are very similar. I would like to hear more from you or others with these considerations around further treatment vs. quality of life for a potentially shorter time.

Breki,
It is wonderful you are still here. Blessings to you and thank you for sharing
I am 69 i had breast cancer back in 2017 chemo , bmx surgery , radiation so was doing well for 5 years then bam this devastating news
I had had back ache for awhile and we kept monitoring a cyst on my kidney. Which the dr finally wrote off on. So most likely it was this. Then in march 22 I began having digestive issues and urine turned orange so got blood work which showed a blockage hospitalized 5 weeks for biopsy tries before getting anything viable , had stents dueodenal and biliary , placed , so
DX April 22 , stage 3 , originally was borderline resectable but then was eventually deemed not operable due to vein involvement , folfirnox landed me back in hospital so switched to gemcetibine/abraxane and did as many as I could but it was rough. Got 2 nd opinion , but surgery for me was not best option , Then opted for mri proton radiation end of Sept 2022 with Dr Michael Chuong at MC I , which they think helped as it knocked my c9-19 into low normal. I have 3 mo follow up scans in a few weeks and I am very nervous as Ive been struggling the past few weeks with major digestive and bathroom issues..
I take creon.
Anyway I can relate to quality of life. However I haven't done chemo since late Aug , which is why my current issues have me worried
You didnt mention if you required stents. But perhaps your initial cancer was not in head of pancreas. You said it took a long time 2 yrs? To feel somewhat normal. I pray the chemo works for you. But as you said when is enough enough. Only you can decide that and It is just such a hard decision . The mental toll can be overwhelming and I struggle with the inevitable
As my family also struggles trying to keep themselves and me positive
Blessings to you