Pancreatic Cancer Group: Introduce yourself and connect with others

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?

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.

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!! ❤️

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.

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

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

Please don't feel guilty, that's an emotion I as a cancer patient struggle with - too much guilt going around. One of us has to go first! Just keep supporting your husband and its wonderful that you are talking to a counselor! Prayers.

Are you or your spouse wearing the booties and mittens with frozen ice packs inside? You get them from Amazon for cheap and after my second gem-abraxane treatment my tiny, leftover neuropathy at the bottom of my foot hasn't become any worse.

Yes, so far ok after chemo treatment, yesterday. Living life to the fullest, and will enjoy seeing reunion committee members in person instead of via Zoom. So husband is eating again? Nutrition so important. So glad he has you and you appear to be so strong and supportive. Your quote is what I tell others who kept telling me to positive and a cure could be coming soon. True, cure could be coming soon, but none of us get out of this alive and as Sally Field tells Forrest Gump, "it's just my time Forrest, it's just my time."

We like to live by that “one day at a time “as well . Yet , we are both “planners “ so anticipating is in our blood -hard to ignore . The neuropathy is brutal and may force a decision here in the next few days .