Pancreatic Cancer Group: Introduce yourself and connect with others

Briefly, I have been through the following:
- Jul. 23, failed Whipples operation
- Aug. 2023 – Jan. 2024, 13 treatments with Folfirinox (100%)
- Feb. 2024, successful Whipples operation
- Mar. – Jun. 2024, 6 treatments with Folfirinox (75%)
- nov. 2024 latest CT scan, no visible metastases, and CA-19 remains within the normal range

Unfortunately, the pathology report after the 2nd Whipples operation showed that there was a lymph metastasis and spread along nerve pathways.

Understood. Thank you for your time.

I do not recall those terms during my meetings. Unfortunately, my cancer has encased the artery and veins of the pancreas. Originally it was pressing against the nerves, which is why I could feel it in my back. Luckily I was mindful about this new pain and insisted on having it looked at. After my first round of Flofirinox, the pain went away and I could sleep again.

djodonnell, have your doctors told you that you have pancreatic ductal cell carcinoma or pancreatic acinar cell carcinoma?

Hi everyone,

I was diagnosed with pancreatic cancer over Labor Day weekend 2024. I knew something was wrong at the beginning of the summer and the local doctors kept misdiagnosing the issue but I stayed persistent. I had pain in my back on both sides of the spine but it was greater on the left side than on the right. It wasn't until they accidentally scheduled me with a spine specialist that he suggested something in the front could be causing the deep pain in my back. This is when they found the cancer after a contrast CT scan.

I went to a local doctor in the Twin Cities, but I pursued treatment at Mayo Clinic in Rochester. I had no idea who to call, but I made my way through the various departments until I was connected with the proper people. We coordinated my treatments with the local Hospital Oncology Department closer to my home, but I still visit Mayo for follow-up and to use their advanced equipment.

This week will mark 8 of 12 chemotherapy treatments so I am 3/4 of the way done. I'm blessed with an incredible support group of family and friends but I wanted to see what others are experiencing in my similar situation.

I look forward to reading the various posts and making new connections.

Keep on fighting!
djodonnell

Beano sold in North America is an OTC product which is the enzyme alpha-d-galactosidase. It is the enzyme specific to digesting vegetables and legumes composed of complex carbohydrates known as oligosaccharides. They are synonymous with high-fiber foods. Examples are corn, peas, cauliflower, broccoli, asparagus, cabbage, Brussels sprouts, all varieties of beans and other foods.

Pancrealipase brands such as Creon, Zenpep and others do not have the enzyme alpha-d-galactosidase blended into them. The pancreas does not produce this enzyme even in healthy individuals and the reason why it is difficult even for healthy individuals to digest high fiber foods. As a result, these undigested items are the source of gas and sometimes bloating. To obtain the equivalent of Beano in other countries, go to a pharmacy and ask the pharmacist for a product that contains the enzyme alpha-d-galactosidase. It likely will be in a gelatin capsule form and taken with high fiber vegetables and legumes, will digest them allowing for the absorption of nutrients and vitamins without gas formation.

I’m so sorry for her diagnosis. It can be very scary. That’s what we’re here for. Ask lots of questions. We’ve been through it all. Chemo is the most common after surgery. If it can be done. There are lots of medicines that help the chemo more tolerable. Best wishes for you both.

Hello everyone. My mother in law has pancreatic cancer and now she is being treated in Turkey. She cane from a country call Kyrgyz republic She found out a month ago that she has this. She is on her first week of key Mo. She is 70 years old. The hospital name is Anadolu Health Center in GEBZE an caner center i Turkey. She is very scared on what might happen. Any thing you can tell us what to used other beside kymo.

Thank you

Olddawg270

I have been taking Creon 12000 unt for about a year. I have gained all my weight back. I take 3 capsules with each big meal and 2 with a snack.

I’m sorry, whenever I think of the expression, “hang in there”, I always think of this poster from the 80’s; just a little levity today!