1 (edited by jypan Mon, 23 Jul 2012 12:26:04)

Topic: Intrahepatic Cholangiocarcinoma- Researching for my brother

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?

-Jyoti

Re: Intrahepatic Cholangiocarcinoma- Researching for my brother

Jyoti, I am sorry I cannot help with the Chemo but want to say what a wonderful Sister you are, a real blessing and your posting is so informative and precise. Know that you are doing all you humanly can and I am saying prayers and wishing the best for all of you!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Intrahepatic Cholangiocarcinoma- Researching for my brother

Jyoti-Welcome and sorry you had to find us. I am not sure ifyou have read my post but I am a CC survivor, 3 years cancer free. I was stage 4 and diagnosed with an inoperable tumor. I was very lucky to skip all the bad or uneducated doctor nonsense and be put in the immediate care of one oth the top doctors, Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO. My only hope was a transplant and was told many times that chemo/radiation was part of the trial but they expected very little if any change in my tumor, they just didn't want it to spread. Our cancer is very chemo resistant.Please read my story on my FB page (Catherine Sims Dunnagan), I also keep another CC success story by Dr. Chapman on that page. I am proof there is HOPE. Please contact me if I can help.
Lots of prayers-Cathy

4 (edited by PCL1029 Fri, 20 Jul 2012 19:38:13)

Re: Intrahepatic Cholangiocarcinoma- Researching for my brother

Hi,

"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?"

I believe your brother has the extrahepatic kind of CC base on the message you wrote on the board.
Chemo-sensitity test (or biomarker test) is NOT currently recommended by ASCO(American Society of  clinical oncology --the largest  medical oncology group in the world ),as a prognosis useful tool to determine the outcome of the systemic treatment. Most of the oncologists will regard the test as another means to know more about the disease state of the patient, some will pay attention to the test a bit more but others don't.The oncologist's own experiences should be the most important factor to treat patients in general.

The reason is simple ,up to now ,there is no standardized values among labs to report the results. If you read the cover letter of the test report carefully, you will notice that the testing company will NOT guarantee the result of the chemo test that will produce benefits that is directly as the result of the sensitivity of each of the chemo agent they performed.
On the other hand, the test ,apart from the the standardized problems; it still provide you a road map in theory, to choose the most possible effective chemo-agent for  your brother's treatment.

In your brother's case, the testing company indicated that your brother is resistant to Gemcitabline,cisplatin and 5FU. So these three may not be the best agent to use on your brother; synergistic effects means the combination of the chemo agents used provided better than each agent when used alone.
(ie: 1+1=3 or 4 instead of 1+1=2 ); But if the chemo agent is not very effective by itself then the synergistic effects will be minimum at best.
Gemox+ erbitux which had high hopes in the past to treat this cancer had just been indicated by its researcher of the "Bingle Trial" to be more or less the same as using GEMOX  alone without Erbitux.
Erotinib(Taeveca) by mouth,like gefitinib(by mouth) are EGFR inhibitors; on the other hand sorafenib,sunitinib (by mouth)are VEGFR inhibitors that can be considered if your Dr.K agrees with the chemo-test report. But for the pump I think most likely they will use chemo agents other than Gemzar,Cisplatin or even oxaliplatin or carboplatin; FUdR may be a possibility but it is related to 5FU and capecitabine.
I am only a patient like your brother and not a doctor;but I hope the info helps you a little bit in understanding about this rollar coaster ride.
Below is the link for further reading about this not so rare cancer.

http://www.cholangiocarcinoma.org/punbb … hp?id=8426

keep in touch
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Intrahepatic Cholangiocarcinoma- Researching for my brother

Thank you members for responding. The bile duct tumor is intrahepatic at the junction of left and right hepatic duct. There is also a 4x3 cm tumor in the left side of the liver.

Thanks for pointing the trial results for Erbitux not being effective in gastric cancers. This is something we would bring up with Dr K in Monday appointment whether there is any point in proceeding with this and why we are not pursuing gefitinib. I will also read up more on VEGFR inhibitors and the pointed URLs.

-Jyoti

Re: Intrahepatic Cholangiocarcinoma- Researching for my brother

Update: July 23, 2012
My brother met with Dr Fong and Dr K. today.

There is mixed news. Starting with good news...the tumor has shrunk significantly post nano knife and embolization.

However the activity in the lymph nodes has increased.

There was a new bump on my brother's scalp that developed about 2 months back that was identified as a tumor. This tumor is external and is not in the brain and according to Dr. Fong it can be dealt with systemic chemo or can be removed.

The area of prime concern is to control metastasis and identify the chemo combination. Dr. K has advised my brother to continue with Erbitux and Gemcetabine and evaluate results after 2 more doses.

Another news that has my brother very very happy is that Dr. Fong and Dr K think it would be actually good for them to go back to India
for 2 months to be with their kids in their home and meet them back in late Sep for evaluation and chemo using HAI pump.

Dr. K and Dr. Fong has identified physicians for my brother to work with.
He gets to go home after 5 months :-) and I confident this will help in his recovery.

-Jyoti