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smyrnalover's Message Board Messages

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RE: Ca19-9 Marker

by smyrnalover - July 01, 2018

Elevated CA19-9 levels can be caused by a number of things. Basically, CA19-9 is a pancreatic protein that is released when the pancreas is inflamed, which can be caused by a variety of conditions, including a benign cyst. So it is not used to diagnose PC. That can only be done by biopsy. You’re doing the right things, but now you just need to wait, unfortunately.
I lost my wife of 49 years in January. She was my lover and best friend. We basically grew up together and I was looking forward to a long retirement together. I feel so cheated and angry. I keep expecting to hear her voice again and I know it won’t happen. This is so hard and nothing prepares you for life alone. I can’t help but be angry at those posters who claim that their faith in God saved them. My wife was a woman of immense faith, but that faith didn’t help. I am still alone. So you’re right about it being soul-destroying. I can’t offer any wise words other than to say we are in this same leaky life-raft together.
The problem with PC is that many of the associated symptoms are generic, like abdominal pain and nausea. However, if you had a negative CT scan, I doubt you have it. Plus you’re very young. PC is very slow growing, so most people don’t get diagnosed until 50. So if your gp says you’re ok, I wouldn’t think about it. Sounds like you need a thorough work up by a gastroenterologist. PC19-9, however, is not considered diagnostic.
I’ve been a member of this club for only three months. I keep waiting for things to get better. My three girls have been wonderful, and I am rotating through visits to their houses and seeing my grandchildren. Like many of you, I was raised as a Christian, but I no longer believe the likelihood of being reunited with the love of my life. It pains me that I was not able to reassure my dying (and believing) wife that I planned to see her again. I am still angry that I, the one with heart failure, had to say goodbye to a woman who always took care of herself and who was going to be there to take care of me. I keep trying to find solace in the memories of our fifty imperfect but wonderful years together. I am selfish in having wanted to go first. But here I am, trying to move forward but still missing the best thing that ever happened to me.
My wife was treated well with Gemzar, and we took a number of pleasant trips. I would not go that far in coach class, however. I think creating those memories was important for us, so go for it!
Hi, Karen, Actually, I am the husband. My wife has PC. We are waiting till after Christmas because oncologist doesn't think we'll have a trend until then. My wife is extremely fatigued and I am still very worried. The last CA19-9 dropped to 15,000, which is progress. We'll see what next week brings.
Karen, we had to switch from abraxane/gemzar to 5-FU. PC19-9 has gone to 24,000. We are very worried. Sound like your husband is doing ok with similar numbers. Were you happy with the 5FU? I don't know what we can do next. Laren
The "latest" treatments are very expensive. However, many of them, e.g., Abraxane, are just modifications of off patent drugs. So I would ask the oncologist about this, since the generic drug in most cases is almost as good. What stage is she? If she is resectable (operable), the surgery is very expensive, but will probably be paid by Medicaid. Also contact Pancan.org . They will definitely have some good ideas. 27! That's way too young. My wife has it but she's 70. Life is not fair.

RE: Concerned ca 19-9

by smyrnalover - September 01, 2017

There are many things that affect this marker, and a level of 39 is no real concern. The question is what the trend is. I would be worried about the lesions, though. Are these benign? Can they do a biopsy? Given your history I would be concerned. Also, a PET scan might be more informative.
Margie, The prognosis is always "gloomy", but progress is being made all the time. My wife is still with us after 28 months since her Stage IV diagnosis, but is now having to switch treatments. She was on Gemzar. It's all a matter of how hard your brother wants to fight. I don't favor alternative treatments, because they have not been demonstrated to have statistically meaningful outcomes, but YMMV.
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About smyrnalover

Caregiver
Pancreatic Cancer
Cancer Diagnosis, Chemotherapy, Conventional Treatments, Diagnostic Imaging, Emotional Support

Ph.D. Scientist, organic chemistry. Married 47 years, 3 grown children. Wife has stage IV pancreatic cancer.

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