My name is Jyoti and I try to keep researching on behalf of my brother who was diagnosed with stage 4 CC in Feb-2012.
We, who have our old parents back home in India always are worried to receive that dreaded call. And that call did come for me on Mar 1, 2012 very early in the morning. But it was not my parents, it was my elder brother, my only sibling.
He called from the hospital saying he needed my help in being seen by some one specializing in CC. A day before he himself had found out that he had stage 4 CC and since then he and all of us were on internet trying to figure out what he was dealing with. First, I was in denial, how can it be stage 4 with him not knowing.
He is a Management Consultant who was traveling at that time and was at a client site, when the client pointed out that he looked pale and yellow. He got home, went to hospital and this is what he found out. There must be some mistake in interpretation. Right? Nope.
Since then I have been on this site and other similar sites trying to understand more. I am so Thankful to the community and got so much hope and information after reading the posts (Thanks kris00j and others).
Me and my husband fly back and forth to NY many times to be there for important appointments, and I have had a trip to India for few weeks to support our parents. My sister-in-law who is the primary care giver is overwhelmed, managing his appointments, diet, kid's studies and activities (kids are in India) and expenses (self-paid medical bills).
I am trying to help by reading up as much as I can and helping my brother and sister-in-law. I wish I lived closer and be with them more often.
Anyways coming back to my brother's case, he managed to see Dr. Fong who he firmly believes can help him within 2 weeks of finding out in mid-march. Dr. Fong referred him to Dr. Kemney for chemo to shrink the tumor such that it becomes resectable.
Within his first week, due to the alarmingly high levels of Bilirubin, a stent was placed to stop the leakage of bile and from then on his chemo started. He was put on the combination of Gemcitabine and Oxaliplatin and many rounds later, the results gave the first jolt to my very hopeful brother and sister-in-law. The combination was not effective in shrinking the lymph nodes or the tumor.
Then another combination was tried for few weeks: Gemcitabine and capecitabine(Xeloda). Same results.
By that time, my brother started feeling worse in terms of pain in the abdomen, his ability to eat and swelling.
Dr. Fong determined he had to intervene and instead performed "Nano-Knife", removed few lymph nodes from abdomen area and installed an HAI pump in mid-June. Meanwhile, wary of chemo results, we also went for chemo-sensitivity assay testing on the sample.
The testing identified that tumor is resistant to Cisplatin, Gemcitabine and 5FU alone as well as in combination.
The drug identified to work was Gefitinib/combination with Gemcitabine.
The installed pump has had leakage issues as of now (July 2012), and there have been 2 attempts to fix that with very little success.
My brother is now on the Gemcitabine and Erbitux. Erbitux was identified by Dr. K in a separate testing.
We now have to decide whether to proceed with the chemo via the pump despite the leakage or just continue with Erbitux.
And at this time we are not informed enough to make the call.
Kris has been kind enough to give some pointers on the forum for HAI pump to ask where the leakage is going. I will also ask on the drug that is being planned via the pump.
I would update that post on what was decided on pump.
http://www.cholangiocarcinoma.org/punbb … hp?id=5975
Meanwhile I would love to hear from members any experience on chemo-sensitivity testing- specifically were the drugs still given despite the test showing resistance to them?