Pancreatic Cancer Group: Introduce yourself and connect with others

Thanks so much for reaching out , we have not tried ice (on my spouses ) foot but we will now . I looked on Amazon and find nothing in a size 13 bracket so we will design our own . The advise certainly helps if even to know no one travels this journey alone

I had the Whipple 6 1/2 years ago, in January I had my left lung removed because of cancer. My CA-19 numbers went down to 13. Two months later the went to 256, now two more months they are up over 2000. My ct scan doesn't show any cancer, but with the pet scan in could be in my right shoulder, but doctor thinks its arthritis. I also lost my voice which they said there was no cancer there....I'm so worried. any thoughts

I don't understand the CA-19 numbers, my husband has stage 3 pancreatic cancer, it is not operable. But the numbers are so low, they have been creeping up, but the highest is 26! So many people have very high numbers, with clear scans, I don't understand this test and start to question it's value.

Just a note, the Naliri has not worked for me. Spread to multiple lesions in the liver, new tumors in and around my peritoneum. I have now exhausted all my chemo options. I'm going on capecitabine which is a pill form of 5-FU, and trying to get into a pan-KRAS clinical trial. Capecitabene is a "bridging" chemo, while you're waiting to get into a clinical trial. No luck at Dana Farber or Mayo Jacksonville, but there may be one opening up in Toronto which would be much easier for me. Now if I can just get into it. My cancer is very aggressive (adenosquamous), looking back I should have gone straight to a pan-KRAS clinical trial. Hindsight. At least on the capecitabene, although I'll still have the side effects, I don't have to go to the hospital, get poked, or carry around that pump bottle - I can take showers.
By the way, I found about a month ago I was feeling very depressed, crying all the time even when someone said something nice to me, or when I looked at my husband at bedtime. I asked the palliative care doctor to prescribe an anti-depressant for me, I didn't want to spend all my days crying. He did, escitalopram, and it's made a real difference - no crying since.
@mnewland99, I am the same age as you - 68! Enjoy your 50th reunion!! ❤️

You might find this helpful: https://pancan.org/facing-pancreatic-cancer/diagnosis/ca19-9/. My understanding is that some people are “non-responders” when it comes to Ca 19-9, that is, they don’t produce Ca 19-9 in reaction to pancreatic cancer.

From what my oncologist told me, acinar cell pancreatic cancer tends to not raise ca19-9 levels. I have acinar cell pancan and these levels stay normal. Possibly burislinda also has the acinar type of pancan?

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Acinar cell carcinoma does not secrete CA19-9 so this biomarker is not usable to monitor chemotherapy effectiveness. Only pancreatic ductal adenocarcinoma and mucinous cysts that arise from ductal cells produce CA19-9. In patients whose CA19-9 falls in a range of -3 to +3U/mL, it is a sign they are non-secretors having both negative Lewis antigen alleles Le^a- and Le^b-. The error of margin in the test measurement is+/-3U/mL so when a value is in that range, it is essentially zero.

For those with acinar cell carcinoma, there is the FaceBook group Acinar Cell Carcinoma and a number of us participate in a couple of Zoom meetings of their support group hosted by the SeenaMagowitzFoundation.org. More on the support group schedule of meetings and how to register is on their web page.

Hello, my name is Dayana my husband got diagnosed with pancreatic cancer on July 13. On July 17 he had a biopsy done in SLC from that biopsy he developed necrotic pancreatitis and is not doing well. We have our first appointment at Mayo this week. Anyone here had necrotic pancreatitis and pancreatic cancer at the same time?

My pathology report said my pancreatic adenocarcinoma was acinar. I have had my CA 19-9 levels tested for the past 7 months by 2 different labs and they have been up and down, with a high of 123 to a low of 30.
No one has said anything about it not being an accurate test. ???