Pancreatic Cancer Group: Introduce yourself and connect with others

My husband's scans also clear the last 4 times (done every 2 months) but markers climbed from normal range to 140 since Dec 2024. He had an infection at first but the markers did not come back down after. So doctors ordered an MRI this week. While the scans generally are more important than the CA19-9 markers, doctors said better to look for cause of the rise than wait-and-see if it comes back down.

Hi, this is Kim's Mike's wife, no more testing yet. Mike's Pan cancer was found incidentally on a PET scan for retroperitoneal fibrosis. He is already scheduled for another PET for following his aortitis and RPF on 3/27/25. They will also do another CA 19-9 on that day. So no more testing yet. the Oncologist said that is what he would be doing anyway. We are also scheduled for a second opinion at Mayo on 4/9.
In the meantime Mike was diagnosed with type II Diabetes last week, I assume it is related to having half his pancreas removed... but endocrine says to treat him like type II, he just started Metformin.

Mike is having a PET scan on 3/27. He does get alot of UTIs too... some fingers crossed maybe it was an infection. thanks

We are hoping they find something else that caused the markers to rise. Infections is generally a cause but infection often comes with fever and my husband has not had fever since Dec 2024. Let's hope for Mike it is the UTI. Hope for a clear PET scan.

Hello I am the partner of my husband recently do dx with Stage III pancreatic cancer . This Ride so far has been thankfully very quick yet overwhelming. The testing procedures booked and completed all while he was unable to eat or digest and such abdominal pain . He had the Whipple done a month ago and just heard the final dx last week . So now the wait for the oncologist appt. Fortunately his pain is gone , and his appetite is returning , weight loss even seems to be plateauing . The emotions run high for the next chapter and what will be offered and decided upon . I’m asking if there is any advice on what to ask the oncology team to clarify the process ?

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.

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.

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.

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.

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.