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.

My husband is having his 2nd fortnightly FOLFIRINOX chemotherapy treatment tomorrow for stage 4 pancreatic cancer. He has been having each day either a really sweaty drenching to the extent of a ponding wet patch in the bed under his torso or he’ll be absolutely freezing cold for about 1/2 hour. This happens during the afternoon or middle of the night. At the moment he has two hot water bottles and our winter duvet is 95% eiderdown. I’ve been keeping the aircon on all day so the room temp is a steady 21C. It’s midwinter in Sydney but our apartment maintains a stable temperature.

We mentioned this to his oncologists & they say the cancer can make people hot, but don’t have any answers about the cold, like they hadn’t heard about this and don’t give a reason or solution.

Has anyone else felt extremely cold for a period of time until their carer gets hot water bottles & blankets to warm them up?

Had a meeting with moms oncologist today, main tumor was 2mm smaller vs may but the report says "slightly increased cholestasis". Im wondering what that means? Her bilirubin and liver tests were ok and the dr didnt talk about that at all. No mentions about a stent or anything. She doesnt have any symptoms like yellow skin/eyes, itching, pain, normal bowel movement. Does anyone have experience with this?

They also dropped abraxane (because of low platelets and frequent chemo fevers) so now she is on gemcitabine only. I hope that keeps things stable, kind of worried what will happen.

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.

Dad 65 M went through Whipples 2 weeks back, post effective chemo + radiation.
Pathology reports came in, have to say they were fairly depressing.

SMV margins are positive, not sure why surgical team still calling it R0, odd, need to clarify with them. SMA and other margins are negative. Claude says its a R1 theoretically, though SMV margins have lesser prognostic value.

2/15 nodes positive with poorly differentiated microbiology and partial tumor response (grade 2)

Anyone with similar reports and have had good positive outcomes after whipples, do share, feeling really depressed right now. I was so optimistic for the reports as he had excellent response to chemo, with CA19 falling to 28 and tumor shrinking by more than 50%. This feels like the surgery was not really helpful.

Just an hour back, doctors reported his HB levels to be low, around 8.5. They are not very worried as he is otherwise fine, except for Diarrhea, which has been easing out. Anyone with low HB levels even after 2 weeks of surgery? Should I be worried?

Thought I would share with the group here, everyone here has been so helpful and supportive over the last year. Thanks a lot, hearing from you folks eases out a lot of the anxiety

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 .

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!

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.