pljc
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My concern began with my own personal journey from being diagnosed, thru surgery & fighting local doctors for adjuvant care, from being turned down by two radioligists until finally finding a Cancer Center that had actually treated this before & told me that although they would be using dirty data, they would have absolutely,positively, without a shodow of a doubt run radation along my resection line. My local hospital in SC did my resection & had partnered with Moffitt about the tissue. Ive already contacted Moffitt to see if they are willing to share with Duke if my Dr gets a study going. We need to be organized. Doctors need to know the resource to refer their patients to if they themselves have never treated this cancer. I didnt know a thing about Mayo’s transplants until after my resection. My Dr at Duke said that would have given me the highest survival rate. Thank you for all the info. I’m just now coming back to life & wanting to get involved in reading & keeping up with all the latest news. Take care, Phyllis
My CA19-9 was 8.3 on the pre-surgery labs prior to my resection to remove my left liver lobe, gallbladder & 5 lymph nodes. I had 9 months of Cisplatin/Gemzar & weekly labs varied from 4.3 to 7. I was tested on my last appt at Duke in Jan2011 and CA19-9 was 6. I was followed for 10 months prior to having a biopsy because none of my labs showed anything wrong! I have Intrahepatic Cholangio, Stage 2, & have been told that CA19-9 will probably never be a realiable predictor for me. Go figure.
My very best wishes for your brother. YOU are a good brother!
Who Knows………!!!! This is great news. My Dr at Duke told me about a pharmaceutical pulling out of a research trial at the last minute. They wanted more bang for their bucks. It was especially sad when he told me how little he needed to proceed. It was more than I had. I decided then to tell anyone who was willing to listen about Cholangio. I think ‘neglected’ is a great word to describe this cancer. On more than one occasion during my journey, I can honestly say that I have felt ‘neglected’.
