greetings
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Hi Marc,
Welcome to the site. Sorry that you had to find us all but glad that you have joined us here as you will get so much support and help from everyone here. Feel free to ask a ton of questions here and everyone will do what they can to help in answering them.
We have a great chemo board here and there are a ton of posts on it from the members here, and many of the posts also discuss the Gem/Cis combo. The board camn be found here –
http://www.cholangiocarcinoma.org/punbb/viewforum.php?id=16
I hope that you will keep coming back here and let us know how things go for you.
My best wishes to you,
Gavin
Marc-Welcome and sorry you had to find us. I am a CC survivor and cancer free for 2 years and 2 weeks now!
You sound like you have really looked into your options. I was treated by Dr. William Chapman at Barnes-Jewish in St.Louis MO. My saving grace was I qualified for a liver transplant. I had to do chemo and radiation protocol first to qualify. The fact yours has metastized might make you not a candidate for this trial. Dr.Chapman is world renown in the treatment of CC and transplants so you might consider another option or opinion. The man is the kindest human you will meet and an outstanding doctor, he saved my life twice!! Please read my story at thetelegraph.com under christmas miracle. I share my story to give HOPE.
Chemo and radiation were relatively easy for chemo and radiation. There was no hair loss, all nasuea controlled pretty good with anti-nasuea meds and tiredness was treatable with rest. Missed one treatment because of low white count. The port procedure is pretty quick and easy too. It seems very strange to sound so nonchalant about these procedures but in the big picture of our cancer these are some of the little blessings.
Lots of prayers-CathyMarc….welcome. The gem/cis regiment is widely used. The largest study ever conducted did show that gem/cis is more effective than Gem alone. Often times, depending on the general health of the patient other drugs may be added to the mix. But, that is something only a specialist can determine. If no positive response is achieved most likely, another regiment will be offered. There are a few cliical trials underway and most likely a few more will be offered in the future. This would be another option to research. The port will make things much easier whichever way you chooe to go.
All my best wishes,
MarionHello, Marcg and welcome to our wonderful family. I am so sorry about this unasked for journey of yours! My suggestion would be to send all your tests and reports to Mayo Rochester MN and perhaps to MD Anderson or Barnes in St. Louis. They are really the creme de la creme. Some of the people you have read up on here are doing well because they got a 4th or even 5th opinion. Because a hospital is big or has a big name doesn’t exactly mean big in CC. Our Mayo here in Phoenix has just started to arrive at this larger state and are doing quite a bit with CC. I am so happy you have been reading our site as knowledge is powerful when CC is involved. I just know some more members are going to hop aboard here with some answers for you but please keep us posted.
I was diagnosed at Christmas with intrahepatic cholangiocarcinoma, both lobes are involved and at my last scan several new small “buckshot tumors” had appeared. I have had some metastesis to T10 and ribs which was treated with radiation. We have been from our nearby oncologist to UNC-Chapel Hill, Duke, and Mayo in Jacksonville with the only treatment options offered being cisplatin/gemcetamine chemo regime. Initially we opted away from chemo since the studies we were referred to varied from dismal to grim with their results. I suspect that the progress of my disease limited options, but am surprised that all 3 of these institutions gave the same option, yet I see others on this website. I have caved in and am scheduled for a power port implant day after tomorrow with chemo to follow a few days later. Any thoughts on the cis/gem regime? Other options?
Thanks,
Marcg
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