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Pancreatic Cancer Group: Introduce yourself and connect with others
Pancreatic Cancer | Last Active: 3 hours ago | Replies (1293)Comment receiving replies
My stage IV pancreatic cancer was discovered “incidentally” already all over my liver six months ago. Treatment (cisplatin and gemcitabine) seems to be working, slight shrinkage on CAT with massive drop in CA19-9. I stopped losing weight and feel embarrassed to have put almost all back on, but I was very anxious to eat as much as possible.
I think it’s important that I have a BRCA2 mutation.
I’m a little confused coming here, because my CA 19-9 numbers dropped from 45,000 to 1,000 over five rounds of chemo, yet 1,000 is apparently still awfully high judging by comments here? The reference range is 0-35 U/ml, but I assumed that was simply for people without cancer.
Does this mean my cancer is still very busy? Is there any sense in which it is only 2% as active as it was if my CA19-9 levels dropped that much?
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CA19-9 tracks well for some, not so for others. But overall it is the trend that matters. Mine is taken every two weeks and I do wait with anxiety to see each posting. However, I have now, since being diagnosed stage IV 11/2021, learned to plot points on a graph with each reading. The professionals look at the TREND. Yours is GREAT!!! Give God thanks and continue to do what you are doing, stay as healthy as possible, while staying on top of research with your doctors for next steps.
Mine was very high. Told I
was inoperable. Once my trend line was overall positive, I saw new physicians. They were willing to think out of the box. I’m still here and feel great after 3 surgeries and bi-monthly chemo. So give thanks for this downward trend and the options it may open!!!!💜