Pancreatic Cancer Group: Introduce yourself and connect with others

I was diagnosed with pancreatic cancer in June, 2022. My diagnosis was triggered by a bout of jaundice. A CT scan revealed a hypodense dense mass in the head of the pancreas and an occluded bile duct. Two ECRP surgeries were needed to successfully insert a stent and open the duct. I had 12 rounds of FOLFIRINOX chemotherapy starting in July and ending at the end of December. I then had a Whipple surgery on January 30th. All margins of resection were clean, so I am considered “cancer free” for all immediate intents and purposes. I’m 10 weeks out from surgery and doing fairly well, all things considered. The journey has not been easy and there are many tales of trials and tribulations to share. But I am in a good place now.

I find I have learned something from every story that is shared in the forum. Hope the journey goes smoothly for you.

Welcome, and bey wishes to you both on this journey. There are lots of us here who have experienced chemo, and each have our own story. I would encourage your husband to speak with the chemo nurses about any (and I mean any) concern, side effects or anything “new” - they often have tips to help deal with them, know what is significant and will advise dr accordingly. Try to rest, eat healthy, remain positive - attitude helps a lot!. It is not easy, but for me, it was worth it to buy time with my family. I had Stage 3, diagnosed Jan 2021. Whipple surgery followed by 12 folfirinox treatments. So far, so good more than 2 years later. You can do this!

Hi, I’m sorry to hear this ordeal with your wife’s cancer. Her situation sounds like my sister who had a Totalpancreatectomy done by Dr. truty back in December 2021 nine months later it was metastasized to her ovaries and she had her ovaries taken out in September 2022. She is having a lot of difficulties putting on weight she has lost 10 KG since the last surgery and at present she only weighs 39 kg on a 5’4 frame. I was wondering how did your wife manage her nutrition? It is so difficult to get their weight up because they need high calories, low fat, low sugar, not too much meat, but how are you supposed to do that when they need to put on weight ? I hear that sugar and meat does contribute to the cancer cell growing …damn if you do and damned if you don’t, I would appreciate if I can get some advice from you. Thank you in advance.!

Hello. I have just finished nine chemo treatments and am prepping for the whipple on 4/24. Everyone that I have spoken with has had a different experience. For me, the chemo side effects became slightly worse with each treatment. It is nice not to have any before the surgery. I found it helpful to reach out to pancreatic survivors and hear their story. I have also found it very helpful to be in the moment as much as possible. I think my wife has had a harder time than me. She has been an angel. Best of luck to you all!

Hello. My husband has pancreatic cancer and has undergone his first round of chemotherapy. I just want to read about other people’s experiences and maybe ask questions in the future. Thanks for having this available.

Brushing taken when I had the ERCP to insert. Stent came back negative for malignancy, yet I actually had stage 3 pancreatic cancer in the head of the pancreas. Location of tumour is an important factor. Don’t rely on only ERCP findings

If the ERCP is done first, the oncologist will have better information to go on. I would vote for getting the ERCP before seeing the oncologist.

I was encourage to do what I felt up to doing. Sleep or nap if I felt like it, go for a walk etc. healthy eating helps. Part way through I was prescribed something (Grastofil needles) to take daily for 7 days after finishing the infusion to help my blood recover. Ask if there is something you can do, or limitations if you are unclear. Medical staff were awesome!

Hi. I don't know if I belong in this group yet, but I have a few symptoms and image results and blood work that seems to be perplexing my doctors.... No pain, No jaundice, light bowel movements, nauseabut no vomiting. 20 lb weight loss over months (unusual for me, usually steady weight) 50% loss of appetitie. Constant gastral discomfort but rarely even a little pain. My stools are a little lighter than usual consistently, they float very often, but without greasy film (sorry to be gross)
No diahreah or constipation.

EBV Positive over 2 months IgG and IgM, Liver Enzymes all elevated, but improving but still high GGT High. ALP highest. Ca-19 negative. Billirubins normal. Ferritin high. CMV positive past only. US showed "a little sludge" in January. CT with Contrast showed small gallstones, no sludge in Feb and unremarkable GB. March had HIDA scan, but they couldn't do CCK because Gallbladder couldn't be visualized on HIDA scan, so they wanted to remove my gallbladder. I asked for MRCP before gallbladder removal consideration. Findings:
liver normal. GB contracted. Mild intraphepatic ductal dilation. Common hepatic duct measures 9 mm. THERE IS EVIDENCE OF COMMON BILE DUCT STRICTURE IN THE MIDPORTION EXTENDING FOR 14MM. DISTAL TO THE STRICUTRE THE COMMON BILE DUCT MEASURE 9MM AND THERE IS AGAIN TAPERING AT THE LEVEL OF THE AMPULLA. THE PANCREATIC DUCT IS MILDLY DILATED MEASURING 5 MM. THE PANCREATIC DUCT IN THE REGION OF THE TAIL THE PANCREAS DEMONSTRATED A MILD BEADED APPEARANCE. THE PANCREASE DEMONSTRATED HOMOGENOUS HIGH T1 SIGNAL INTENSITY AND ENHANCES HOMOGENEOUSLY. Another finding that i'm not sure is related is it appears that I have Pancreatic Divisum. Colonscipy 9/22 normal. Upper Endoscopy 12/22 basically normal outside of standard erosions, gastritis, peptic issues, but nothing major. All my tests seem to contradict each other.

HAVE APPT TOMORROW for ERCP/EUS and I am not sure that is the right direction for me. My gastro is
perplexed as is infectious disease Dr. Went for 2nd opinion and that gastro is perplexed. They all agree I should have ERCP. I'm thinking that I should meet with oncologist before ERCP. Any thoughts would be
tremendously appreciated.