Pancreatic Cancer Group: Introduce yourself and connect with others

My wife hema age 43 pancreas cancer 4 th stage 2023 Aug after chemo trips 8 cycle again 6 cycle tablet, again 3 cycle chemo trips 21 days gap last time loose motion,mouth infection so no eating only jouse body very tired and weakness. Daily vitamin tablet pain relief tablet paracetamol 650 mg . please any other treatment

Hello. My daughter has pancreatic cancer. She had a whipple in Oct 2024 for continued blocked duct and that is when cancer was found it was staged at 2b. Her recovery from the Whipple was remarkably smooth. Once she started chemo, the journey has been hard. She has been hospitalized numerous times- for sepsis and for pancreatitis. It seems like every time she is hospitalized is a step backwards.
It is hard as a parent to be supportive without being intrusive- although I have stepped over that line. Anyone else in a similar situation?

Jeeplewis thank you for your support and information

Thank you for your information

There are two types of pancreatic cancer: acinar cell and ductal cell. I have acinar cell and was told the CA19-9 test was an unreliable indicator with this type. Thank you for your time.

Kathy, Welcome to the group. I wish you all the best in the journey--it sounds like you've found a place of acceptance. Of course, there may be twists and turns ahead!

Regarding the CA 19-9, my oncologist has said that some folks aren't "secreters", i.e., don't produce that antigen. This is from the Pancreatic Cancer Action Network website:

Not every patient with pancreatic cancer will have a high CA 19-9 level.
Some conditions other than cancer can cause high CA 19-9 levels.
The CA 19-9 test cannot be used to diagnose or screen for pancreatic cancer by itself. Instead, doctors often use it to judge a treatment’s success.

I was told that the 19-9 blood test shows 0. My Dr said that it should show certain numbers going up or down, but the blood test shows 0. I don't know what acinar cell means. I wish you good luck and keep on fighting.

Ma'am, I'm just curious since you stated this: "Also we have discontinued the 19-9 test because my body does not register it." Is your pancreatic cancer the acinar cell type. That's what I have and was told that with acinar cell pancreatic cancer, the CA19-9 tests are not a reliable indicator of disease. I wish you well and my situation is similar to yours.

Hi, I'm Kathy. I am 74, soon to be 75, years old. I have pancreatic cancer stage 4. I was diagnosed in Sept. 2024. I have been on Gemzar and Abraxane. Today my doctor, husband and I have decided to drop Abraxane from my schedule. Also we have discontinued the 19-9 test because my body does not register it. I am 2 weeks on and 1 week off. The reason we are discontinuing the Abraxane is because of severe flu like symptoms, severe bone pain, not being able to focus on things and being unable to do physical things for at least 4 days out of the week. I also suffer from neuropathy. I had a scan in Jan. and it showed the tumor, which is in the body and tail, shrank 1/2 inch. I am getting another scan in April. The doctor said that the Gemzar will maintain the tumor but it is inoperable because it is entangled in many blood vessels. He said it has invaded the entire celiac axis and there is little chance of survival. I am ok with this disease because I have accepted the outcome. I live day to day without thinking of it and now that the Abraxane is being stopped, I will be able to live a more fuller life.

Ask for mutations identified as a result of biopsy. Did they put him on a rx pancreatic enzyme? Stage 3? Were lymph nodes impacted and how many? Did they get it “all” during the surgery. When do chemo treatments start? Wear booties and mittens during chemotherapy. Is a clinical trial a possibility? Best wishes in your journey and you are smart to ask which questions to ask.