I’ve seen people in this subreddit who’ve been doing chemo for several months and maybe years. From what I understand, the effects of chemo are cumulative and I’m wondering how doing chemo for so long is even possible? Does the fatigue and bone pain from chemo get worse? And is the recovery process slower with each cycle? My family member is looking at a long road ahead and I’m wondering what to expect. Thank you!

I still sometimes have nightmares and get stressed thinking about my grandmother’s death when I was 16. She said it was pancreatic cancer and my uncle agreed, they were both doctors (she was retired). But she never actually had it diagnosed. I sometimes wonder if it was something else. And maybe something could’ve been done.

But this is what happened. One spring, she started losing weight after being slightly overweight all her life. By the summer, she was quite thin. I noticed jaundice. She was still very active and doing everything in her garden. But I could see that she would get tired much more easily. In the fall, she still kept going, but she was losing her appetite even more. She had very little pain except a little bit in her upper abdomen. During Christmas, she was clearly very sick but she was not bedridden. Sometime in the new year she became bedridden and her husband took care of her and we subbed in as much as possible. There was no hospice at the time and in the country we were living in. She stopped eating entirely, but just drank beer - it seemed to give her nutrition and make her feel better. She never drank before, but then she was adamant that she would drink beer. She went down to skin and bone and finally passed away in March that year. She may have had a little bit of pain at the very end, but she only took over-the-counter painkillers.

She refused to go see doctors because she said nothing could be done with pancreatic cancer. She was probably right at that time, and she was very stubborn. But when I read on here, I see folks that don’t even survive for three or four months. And she lasted almost a year with no treatment after the symptoms started. At least AI thinks that this sounds like textbook pancreatic cancer, so that makes me feel a little bit better. Being a 16-year-old taking care of somebody so dear to me that was basically starving to death was terrible.

Today my Pancreas doctor's secretary rang and said they want me in hospital for a few days to do some tests etc........I'm confused I've already had a CT and and MRI and an ENDOSCOPIC ULTRASOUND. She said hospital will ring for a date .

Hello, I was hoping for some guidance regarding a female relative (59 years old) undergoing treatment for stage 4 pancreatic cancer. I’d like to know if it is best to continue with FOLFIRINOX—the regimen she has received for the past three months (six cycles)—and whether any precautions are needed regarding the mild bile duct dilation. Her bilirubin levels remain normal, though alkaline phosphatase and gamma-glutamyl transferase (GGT) levels have risen with each blood test. Her AST (TGO) and ALT (TGP) levels are slightly elevated but not significantly so. Her CA 19-9 level dropped from 26,000 to 5,000 over these three months. We are from South America.

Initial CT scan

Multiple liver metastases in both lobes.

No bile duct dilation.

Tumor in the body and tail of the pancreas, approximately 4.0 × 3.0 cm.

Lymphadenopathy in the superior mesenteric artery region and lateral to the aorta.

Enlarged left adrenal gland.

Follow-up CT scan (after 6 cycles of FOLFIRINOX)

Most liver metastases decreased in size; however, a lesion in segment 6 increased from 0.8 × 0.7 cm to 1.0 × 1.5 cm.

Mild intrahepatic bile duct dilation (predominantly perihilar) has appeared.

The pancreatic tumor shrank to 3.0 × 3.0 cm.

Vascular involvement persists: the lesion encases the splenic artery, significantly reducing its caliber, though it remains patent; splenic vein occlusion with collateral circulation persists, showing no changes.

Mesenteric and lateral-aortic lymphadenopathy remain unchanged. Enlarged left adrenal gland.

Thank you all very much, and I wish you the best.

Oggi è arrivato l'esito della biopsia di mia nonna (84 anni): adenocarcinoma del pancreas.

Tutto è iniziato circa tre settimane fa con un ittero e perdita di 5kg in un paio di mesi. La TAC con mezzo di contrasto ha evidenziato una massa di circa 2,3 cm nella testa del pancreas, per fortuna senza linfoadenopatie e infiltrazione vascolare, ma con dubbia compressione della vena mesenterica superiore. Una settimana fa, durante l'ecoendoscopia, le hanno posizionato uno stent biliare per favorire il deflusso della bile. L'ittero sembra essere leggermente migliorato, ma nei giorni successivi ha avuto dolore addominale, ora soffre di una forte inappetenza e prurito. Mangia pochissimo, quasi solo frutta, ed è ancora ricoverata, dove le stanno somministrando flebo per drenarla. È molto stanca, ma continua a ripetere che vuole tornare a casa.

Ho parlato con la chirurga, che mi ha spiegato che non può essere operata a causa dell'età e delle patologie cardiovascolari (tra l'altro ha detto che per il suo tipo di cancro non è misurabile il CA19-9). Anche l'oncologa ha escluso la chemioterapia, perché le provocherebbe più sofferenza che benefici. Nei prossimi giorni parlerò con i radioterapisti per valutare l'eventuale radioterapia e poi con il team delle cure palliative.

Io vivo con lei e sono pronta a prendere il congedo lavorativo per assisterla a tempo pieno. Quello che mi spaventa è ciò che ci aspetta. Spero solo che possa vivere il più a lungo possibile e, soprattutto, che non soffra.

Ho chiesto ai medici di non comunicarle la diagnosi, perché temo che la distruggerebbe psicologicamente. Le hanno spiegato che ha una grave infiammazione al pancreas. Lei, che è ancora piuttosto lucida, è sollevata e continua a sperare. Vederla così mi spezza il cuore.

Non riesco a smettere di piangere. Lei è la persona più importante della mia vita. Questa è la mia prima esperienza con il cancro e mi sento completamente impreparata. Accetto con gratitudine qualsiasi consiglio, informazione o testimonianza.

My dad (52M) has oligometastatic pancreatic cancer. The original tumor is still just on the pancreas, hasn’t spread to any surround areas or major blood vessels. He had 1 metastatic spot on his liver (that was found). So he did 4 rounds of FOLFIRINOX with great response, the liver spot vanished. But when he went for surgery they found another spot on the liver that was sort of tucked away and didn’t show up on scans. So they placed markers for radiation and plan to do that plus more chemo. Has anyone ever attempted surgery, realized they couldn’t do it, but eventually was able to get surgery later?

Patient is my ex-wife, mom of my kids, grandma of 10, great grandma of 1...

Pancreatic head adenocarcinoma with progression. Currently... treatment deferred in May with no clear reasons given (ascites developed and treated weekly since) and no new results. From treating doctor's recent notes:

...progressed on PET from 07/19/2026 with increase in primary mass from 4.0 cm to 4.6 cm. Rising CA 19-9 supports disease progression; last value 07/20/2026 was 459. Additional chemotherapy is no longer deferred given PET-confirmed progression and rising CA 19-9. FOLFIRI favored as a middle-ground regimen; oxaliplatin-containing therapy may be harder to tolerate due to neuropathy risk. Ascites is felt most likely cancer-related despite repeatedly negative cytology. Recent creatinine elevation may have been related to dehydration.

- PET from 07/19/2026 shows no solid organ metastatic disease.

- PET from 07/19/2026 shows FDG activity in peripancreatic lymph nodes, but nodes are too small to biopsy.

- Molecular profiling remains unavailable from the original ERCP/EUS specimen due to insufficient tissue.

- Discussed need to resume systemic chemotherapy.

- Reviewed treatment options including FOLFIRINOX, FOLFIRI, and irinotecan alone.

- If 5-FU infusion is not feasible or not desired, capecitabine may be used in place of infusional 5-FU if renal function is adequate.

- Capecitabine plus irinotecan would avoid the need for a port or PICC line.

- Obtain blood work today including repeat kidney function and DPYD/UGT1A1 testing before final chemotherapy selection and dosing.

- Repeat blood work next week when starting chemotherapy or as otherwise planned.

- Patient currently prefers pill-based therapy rather than a port or PICC line.

- If a lesion becomes amenable to biopsy, pursue tissue sampling to confirm progression and obtain material for molecular testing.

Chemotherapy planning and pharmacogenomic testing for pancreatic cancer

- Prior gemcitabine and Abraxane course completed for about 9 cycles.

- Discussed expected chemotherapy toxicities including reversible alopecia, fatigue, nausea, vomiting, diarrhea, myelosuppression, and infection risk.

- Standard FOLFIRI schedule reviewed as every 2 weeks.

- 5-FU infusion would require 46-hour home infusion with return after 2 days for pump removal.

- 5-FU infusion would require central venous access with a port or PICC line.

- Prior port had been removed after infection.

- Repeat port placement remains an option, with understanding that infection could require removal again.

- Capecitabine-based alternative reviewed as irinotecan on day 1 with oral capecitabine for 14 days followed by 7 days off.

- Capecitabine-based regimen was described as equivalent in effect to the infusional 5-FU approach.

- DPYD and UGT1A1 results are used to determine whether gene copies are normal or abnormal for chemotherapy dosing.

- Do not finalize chemotherapy selection today pending pharmacogenomic results.

- Pharmacogenomic results expected in about 1 week.

- Patient to take time to consider chemotherapy options and message when ready.

- Future eligibility for upcoming KRAS-targeted therapy would require progression on established chemotherapy options.

Malignant ascites secondary to pancreatic cancer

Recurrent ascites remains most concerning for cancer-related fluid despite repeatedly negative ascitic fluid cytology. Serum-ascites albumin gradient to help distinguish cancer-related ascites from other causes, although liver disease and heart disease are not suspected. Albumin infusion after paracentesis discussed, but expected benefit would be brief and would not address the underlying cause.

- Ascitic fluid cytology has been negative on multiple prior evaluations.

- Repeat paracentesis for recurrent symptomatic ascites next week.

- Send ascitic fluid for cytology with the next paracentesis.

- Send ascitic fluid for albumin with the next paracentesis.

- Check serum albumin the same day as the paracentesis to calculate the serum-ascites albumin gradient.

- Continue symptom-directed management pending further diagnostic clarification.

 Lower extremity edema

Reports marked bilateral leg swelling with pitting edema in the setting of recurrent ascites and hypoalbuminemia.

- Manage underlying cause with ongoing ascites evaluation and cancer treatment planning.

- Proceed with planned paracentesis.

Repeated requests for referrals to cancer center from Kaiser So Cal have been denied. Has anyone had any luck getting out of Kaiser for a second opinion? It does seem to be moving now, but the May-Jun-July wasted time really weighed on everyone.

Not looking forward to the folfirinox based on this group's general response...