please help im confused about my dad case
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Hi Mark,
Sorry to hear what your dad is going through right now. I agree with what Marion has said to you about seeking further opinions from other specialists, doctors, onc’s etc, has your dad done this before now, and if not do you think he would want to do so now?
As Percy says, my dad had PDT as his only treatment for his CC. He never had chemo, surgery or radiation for various reasons and he wanted to do the PDT. I posted a bit about it back in 2008 when he had the procedure and this post here details his experience of it.
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=1940
Please, if I can help in any way more about my dads expreinces with PDT then please just ask and I’ll do what I can to help. We are all here for you.
Best wishes to you and your dad,
Gavin
Hi,
Phototherapy(PDT) is used for treating extrahepatic bile duct cancer(cancer in the common bile duct and/or left and right hepatic bile ducts that goes to the liver) and PDT is not for intrahepatic liver (cancer in the liver).
Howerer IMRT(cyberknife) is also for extrahepatic CCA.
Gavin knows more about PDT and he will be in touch of you shortly.
But please make sure yours is extrahepatic CCA.
God bless.Mark…as far as I recall your Dad had an adenocarcinoma focally in the surgical margin. Is the physician speaking of this at all?
Mark, we do not have a doctor on this site therefore, all information given here must be confirmed by a specialist. And, we strongly urge our members to search out additional, professional, opinions.
This might be the time to do so. Where are you located?
Hugs,
MarionMarion does it have something with life expectancy ? Or prolonged time for him,I’m so scared of the reccurence now the onc said that it’s bad and he have poor prognosis, I’m trying to do everything to help him I’m afraid from the time he is feeling well now without symptoms he is in xeloda until 10/6 the next scan but the onc told me he have around 30% chance to stabilize the disease with xeloda which is poor prognosis, if you can help me give me the e-mail of your onc to send my dad medical file to get his opinion
mark….some patients lack the Lewis antigen (a blood type protein on red blood cells) even with large tumors. A specific enzyme (fucosyltransferase enzyme) has to be present in order to produce CA 19-9 including the Lewis antigen.
Hugs,
MarionI listen that the phototherapy is doing good result , do you have any info about it,what is the best therapy for reccurence
Hi,
May I ask do you have the result of the AFP and CEA and what are the values?
CA 19-9 is not an absolute indicator or 100% useful biomaker for cholangiocarcinoma. I had told you before I. Had 14 months of gemcitabine after my first resection and I did cat scans every 3 months for check up after I stopped the Gemzar. 6 month later, the CCA returned. During the 20 months after the first resection,I had CEA and CA19-9 done every month and the CA19-9 never exceed 27 ( well below the value of 37). I believe CA19-9 is of limited value in predicting the return of CCA in ” intrahepatic cholangiocarcinoma” as compare to extrahepatic cholangiocarcinoma.
God bless.Welcome marktannouri. Sorry you had a reason to find this site, but glad you are here where there is a wealth of information from both those who have this cancer and their loved ones.
I am not an expert, just a patient like your dad but my CA-19 was never elevated even tho I had surgery and the pathology showed cholangiocarcinoma. So it is not always the case that CA-19 is an indicator of or a way to rule out a malignancy.
I am sure others will chime in here soon.
-Randi-hi all,my dad was diagnosed last year with a 12 cm tumor in the liver the doctor said its cholangiocarcinoma he’s ca-19-9 was slightly elevated about 57
we went and saw the surgeaon and he said that the surgery is the only hope for cure , he had a lobectomy since 1 year with clear margins then he has been on gemzar the onc said it would be better to reduce the risk of a reccurence then had a hepatic MRI not showing any reecurence and was appointed to do a new MRi after six months ,now, last month he had the MRI that is showing multiple secondary lesions on the liver, im shocked!!! and the ca-19-9 is normal not elevated, i asked his onc how could it be that the ca-19-9 is not elevated and he have a reccurence of the diseaswe now??? is that possible??? please someone tell me, i asked another onc about my dad situattion he told me that he doubt that my dad have cholangiocarcinoma!!!!! he asked me to make the alfa pheto protein and the cea test, because he doubt its a cholangiocarcinoma cause the ca-19-9 is not elevated and is normal he think it is not the primary of the cancer but a metastaze that is coming from a unknown primary location, my dad is now on xeloda waiting for next MRI the 10/6 and is doing well he deosnt have any symptoms and just feeling ok , im so afraid that its not a cholangiocarcinoma but a unknown primary location that is coming to the liver ,can anybody help me please im so confused.is it possible to have a reccurence with multiple lesions on the liver from 6mm to 25mm without having the ca19-9 elevated??? please tell me or its not cholangiocarcinoma???
please any advice of you will be very helpful to make some desicion about my dad situation
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