Pancreatic Cancer Group: Introduce yourself and connect with others

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’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.

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.

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

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

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.

Understood. Thank you for your time.

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.

My pathology also showed spread to 3 of 26 lymph nodes and nerve involvement after my Whipple, although margins were clear. But CT scan 2 weeks after 12th round of Folfirinox showed metastases to liver and soft subcutaneous tissue in my belly, and my CA19-9 rose to 322. Even though my CA 19-9 remained below 11 all during my treatment, Oncologist says this means the Folfirinox did not work. I am now on Gemcitabene/Abraxane and my CA 19-9 is coming down again, here's hoping it can get the beast under control.

Can you tell me how you are doing on Abraxane my brother Frankie just started chemo last week it is twice a month for six months , he had the Whipple surgery August 16, 2024 and all the tumor was removed from the head of the pancreas he had one lymph node positive out of 27 And no spread of the disease I was just very surprised that he was having Abraxane for treatment since I read it is a very strong chemo And for advanced or metastasized pancreatic cancer.