CA 19-9 and pancreatic cancer: What do the numbers mean?

To LML -your statement "feeling of threat" is profound, I was not able to phrase it as that. And denial crops up also - reverts to childhood thought process for me; if not recognized it may go away. My spirituality is very sincere with daily thoughts of that I am here. Six years now and fighting for more life and daily prayers of thanksgiving.. We have to keep the LIFE a very superior element of our thinking. Your last sentence "Cancer --- and continuing to the end of your paragraph", I recall when the Dr. spoke the word cancer - can only describe my brain as expanding and retracting. I asked my son who was standing near me if he was okay with this - he said yes; and everything ran its course since then. Please try to move past what we feel is our life sentence - I try to live in the thoughts of Brother Lawrence, "The Practice of the Presence of God". Wishing you peace and courage. P.

PS, any issues with insurance covering this drug treatment?

PS, any issues with insurance covering this drug treatment?

Thank you for this reply, I appreciate it! My husband is currently on a maintenance-type dose of single agent gemcitabine and it seems to be holding things in check for now but I will definitely be asking his oncologist about Onivyde when we see him next week in Rochester. CA 19-9 remains high (around 5000) but we are nearly three years out from his Whipple surgery and still glad to be here - hoping for many more years. Take care!

@buckslayer I can't address whether Mayo uses Onivyde. My wife's treatments have been at Johns Hopkins and locally at Advent Health Cancer Center in Central Florida. Onivyde was actually first approved in 2015 and is the only chemo agent which is specifically approved for pancreatic cancer. All of the other agents, 5fu, leucovorin, irinotican, oxalyplaten, cisplaten, gemcitibine, abraxane etc are all generic gastro chemos and have been available for decades. We only learned about Onivyde when I insisted that my wife be put back onto folfirinox because the GAC and GA treatments had failed but her original folfirinox treatments had actually gotten her CA19-9 below 30 and the primary tumor was necrotic when they opened her up. After 2 onivyde treatments my wife's CA19-9 was down by 59% and we're hopeful that we see additional significant reductions and that the previously identified tumor has stabilized or shrunk by the next scan. Good luck to you and hopefully your doctor has other options or trials available.

Do Mayo Clinic oncologists use this new chemo treatment? Our doc has not mentioned it as an option when Fox and Gem stop working......

My wife's recurrence was treated with 8 GAC treatments then 10 more GA treatments. The CA19-9 bottomed out after the 6th GAC treatments but started rising despite "staying the course" with more treatments. We were ready to quit treatments because the side effects are so debilitating and our requests to go back on folfirinox were being rejected. Finally, we got the approval to switch to Onivyde (same as folfirinox but with the liposomal modified irinotican). After 2 Onivyde treatments, her CA19-9 has dropped 59%! We won't get another scan until after the 6th treatment but now have renewed hope that the cancer can be beaten. Our oncologist is also reviewing clinical research for additional agents for treatment and eventual maintenance. CA19-9 is only one data point but has been very good at predicting recurrence or absence of tumors for my wife.

I hope they got you started on the Onivyde quicker than my wife. I'm not happy with the oncologist's logic that the GAC/GA needed to stay the course. It meant extra months of a failing regimen. I really hope this wasn't an insurance requirement. For both of you, I'll be praying that the Onivyde stays effective and side effects bearable.

I hope they got you started on the Onivyde quicker than my wife. I'm not happy with the oncologist's logic that the GAC/GA needed to stay the course. It meant extra months of a failing regimen. I really hope this wasn't an insurance requirement. For both of you, I'll be praying that the Onivyde stays effective and side effects bearable.

I had to move from Folfirinox to Gemcytobene as well but my CA19-9 rose with ut. I am now on same regimen as your wife and CA19-9 is stable. I have lesions in the liver as well and will do a CT in two weeks...hope to see stabilization rather than progression of disease. The best to your wife.