Maybe jumped the gun a little….
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Patrick…we have received the above message. Please, contact Rick@cholangiocarcinoma.org. He will be able to help you with problems encountered. I know that for sure because, I must have been his biggest headache in the past.
Good luck.
MarionPosting Messages On this site
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Patrick
Thanks Marion. We’ve gotten complacent because of all the good news we usually receive so this is kind of a reality check. You can never let your guard down with this monster. Weve lapsed a little on the diet so back to daily carrot juice and bowls of spinach! HA!
Dear Mary….This is what I have learned so far and I am hoping to be accurate in my statement. The way I came to understand it is that the tumor markers have a 5% false/positive rate. It can be elevated in people who do not have cancer or it can be normal in those who do. Blood not handled properly by the lab can also cause a false reading. Many physicians completely dismiss the CA 19-9
Well, we didn’t have ALL of the info when I last posted They did a CA19-9 and the Doc called yesterday with the results which are a little worrisome. It jumped from hanging in the forties to 129. I realize that is still low for a lot of people but I guess the Docs are concerned that there is something going on that they can’t see. They want another MRI in 5 weeks and probably another bloodtest. What is is with this beast that it just can’t let things be?My question to anyone who is a lot more knowledgeable about these tests (Marion?) is can other things affect them? I swear I read somewhere the past few years that they can go up and down from diet, medications or inflammation. Does anyone have any info? Also why do some people have normal tumor markers with very big tumors present and others have no tumor visible but high markers? Is it just so we can all go wacky with worry? That doesn’t take much for me anymore. Thanks, if anyone can answer- I’ve been lucky enough to not have to research for a long time, now I can’t remember what I read and where!!
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