Connect
← Return to Pancreatic Cancer Group: Introduce yourself and connect with others
Discussion
Pancreatic Cancer Group: Introduce yourself and connect with others
Pancreatic Cancer | Last Active: 4 hours ago | Replies (1298)Comment receiving replies
Wow! Down to 8. That is great. I guess they call it radiologic remission instead of NED now?
Whatever. We know that we must be on alert and continue to scan quarterly at least!
I took a one month break from chemo in February and started back on gemcitabine alone. Upcoming scans will tell the story but I have to believe it was a healthy decision. If a new occurrence has popped up I will know that it is still active and have yet another data point to track the disease. I hope yours will stay in remission and you can look forward to enjoying Spring!
Replies to "Wow! Down to 8. That is great. I guess they call it radiologic remission instead of..."
The oncologist called it "radiological remission" and the CT report says NED (no evidence of disease). The oncologist has had many discussions with me & my husband about the need for vigilance by testing & which tests he prefers in my case. He also has stressed that with pancan stage 4 non-operable with mets to lungs I will never be "cancer free", there will always be some little guy/gal running around in my body that could implant somewhere & start growing. Thanks for the support. I hope my CA 19-9 goes back down to 8 again. I do not like it above 36! With all the weather changes my arthritis sure can be a culprit for the inflammation and increase of the CA 19-9, but I still will be vigilant 🙂
Connect
@gamaryanne , It will be interesting to compare notes and data points. On my GAC chemo recipe, they reduced the Abraxane by 15% for my two biweekly treatments in January (Gem and Cis still full dose), with slight increases in my CA19-9 each time (from low 40's to low 50's).
In early Feb I had to miss a treatment (because of Covid, on my birthday no less), so it was a 4-week interval before I got infused again. CA19-9 was up to 131 by then, so I restored the full dose of Abraxane for that treatment. Will find out this Friday if that did anything for my levels.
I also had scans last weekend, and results showed growth after consistent shrinkage in the 4 main tumors we track. Not sure if it was due to the Abrax reductions, the missed treatment, new drug resistance, or none/some/all of the above, but I'm scared as hell now to skip or reduce anything.
Also had Tempus testing done (finally) on my Whipple tissue from 1.5 years ago. We knew about my germline ATM mutation from the outset, but Tempus also identified a somatic KRAS G12D mutation that Guardant never picked up from the blood-only test.