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Hello Graye and welcome to our remarkable family but sorry you had to find us. You posted just fine but we would like to know more about you and your courageous fight against CC. Along with hearing more of your story please do keep us posted as we truly care!

graye....I would like to follow the others in welcoming you to our site.  I am wondering why you don't qualify for anything else.  Have you consulted with another center for a second opinion?
Hugs,
Marion

Guess my initial post didn't really give enough info - I don't want to give the impression I am doing poorly - it's just the opposite - I have been fortunate to be able to tolerate a lot of chemo - the cis gem combo has worked better than anyone expected - my last ct was clear! 

So a little more about my journey. 

In February 2011 started noticing an unusual sensation around my belly button and then got what appeared to be a yeast infection, after several months of attempting to treat with antibiotics it just kept returning.  Then in late May I developed jaundice (turned an impressive shade of yellow) and was hospitalized and a stent placed into my bile duct.  Belly button - turns out was a tumor - Sister Mary Joseph Nodule.  After a bunch of testing was diagnosed with Stage IV CC - tumors in bile duct, liver, gallbladder, belly button and lymph nodes.

Belly buttom tumor surgically removed in July.  Plastic stent got infected in late July and developed pancreatitis (worst pain I have ever felt), hospitalized again and plastic replaced with titanium stent - so far haven't had problems with it.  Started cis gem Aug 1 2011.

I did initially get 3 different opinions - Dr. Harris was positive that he could treat - other 2 were so bleak really wasn't even a thought not to choose Dr. Harris - 1 was from CC specialist at the Moffitt Center in Tampa.

Throughout this process we have looked into resection, transplant, radiation, chemoembolization - distant tumors and undefined tumors initially ruled out everything except chemo.

Now plan is to change to carboplatin gem combo to give kidneys a break.

Marion -  At this point yes, the treatments are indefinite.  As long as the treatment is working and I can handle it, Dr Harris wants to continue and I agree - it's more a knock down and keep it down plan right now.

The day we changed from cisplatin to carboplatin because of my kidney function my tumor markers came back slightly elevated and a followup test confirmed so it appears the cisplatin was also becoming less effective.

Just had my first carboplatin treatment will just have to monitor to see if it is effective or not - have to say compared to the cis gem the side effects so far of carbo gem are very mild.

There may come a time when all available chemo treatments no longer work for me and the cancer starts growing again - at that point I would probably become a candidate for other types of treatment but I am happy to put that off as long as possible.