New Member

Hi all, I’ve been checking this site for a little over a year. My story started back in 4/2011. Had a cold..coughed up a storm..had terrible sternum pain. Was diagnosed with costochondritis. Had X-rays nothing else just let it rest. Got a bit better but it repeated again in Oct. another X-ray and steroids but sent for CT Scan when it didn’t heal. They found a lesion on my sternum and a mass in the liver. By Dec 2011 I was diagnosed with an unknown primary that had metasticized to the liver and a few bones. I was told I was not a candidate for surgery.
We spent about 2 months trying to figure out a primary through biopsies and scopes and blood tests. Nothing was abnormal or too high or low or hurt or etc. with an unknown your chances are only as good as what they try. I was seeing a Doctor at Siteman Cancer center in St. Louis and asked him where the best unknown Doctors were and he sent me to Sarah Cannon Research Center in Nashville. So I went for a second opinion there, during one of the biopsies I had some results for tumor markers. It matched up to one of the studies they were conducting there. We also sent my liver tissue off to California to be genetically tested.
The Nashville doctor said that only about 2% remain unknown primaries and we went ahead with the study. I was on 3 different chemos..Carboplatin,Etopiside and the study one. I was on that from 2/12-7/12. Initially the liver tumor was shrinking and the bone tumors less active. But after we dropped off the 2 chemos it plateaued and then the liver started increasing again.
From the tissue that was sent to California a diagnosis was made that there was a 67% chance of it be Cholangiocarcinoma , a 25% chance of gall bladder cancer and 5% chance of being about 30 different kinds. So…both my doctors believe that it is CC just because of what they can see and what they can’t. Although neither can explain why all my blood tests show no cancer markers.
So in July I came back to Siteman and started a standard of care chemo regime for CC. I have had 12 cycles of Cisplatin and Gemzar. I had liver tumor shrinkage after the first 4 and after the second 4. I go next week for my 3rd scans. The bones they believe are looking better but they have said that is more difficult to measure.
I have also had 4 bone areas radiated to keep them from causing problems.
I am 52 now..was pretty healthy before I found this out and currently don’t feel too bad except for the neuropathy in my feet. I enjoy reading all the posts and try to get as much info as possible because as I have read on here before someone needs to be the exception and my plan is for it to be me.