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(40 replies, posted in Introductions!)

Randyswife- with stent the bilirubin will slowly keep coming down and yellowness will also fade out slowly. I believe once obstruction clears out, hiccups will also go away. My brother went through all this in March.

Hello, I need recommendations for an Oncologist and Liver surgeon working on CGC cases in New Delhi/Gurgaon region India if possible.

Any other suggestions for Oncologists in India working on CGC cases is welcome as well.

My brother was being treated at MSKCC Sloan and has gone to India for 1.5- 2 months. He is already in touch with an Oncologist there but I would like to members to share their recommendations as well.

Thanks.

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(106 replies, posted in General Discussion)

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.

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.

Thanks Lainy understood. We have been very cautious regarding "other" treatments as (1) we are not domain experts in that field (2) we would not know how they may interact with the ongoing chemo (3) how the body will take it and so on...

We are being very cautious such that nothing may potentially reduce the effectively of chemo and many times in past when we asked Dr K about supplements she dismissed them, so I would not go beyond that.

I still Thank Kristin for her suggestion and would research more for my knowledge.

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.

Kristin,

On air toxicity,  he actually consults for manufacturing companies. Visiting steel plants, alloy manufacturers and what not.

He has been in extended projects for such plants consulting on their supply chain. I will find out more if he has been exposed too much in factories and or a specific city.

My brother (48) was diagnosed with CC this year. He has always been a vegetarian, does not drink or smoke, no liver issues or past history of cancer in family.

He is a Management Consultant for 15+ years and the job requires extensive travel- almost everyday. 50% of travel is international - 10+ hour flight and remaining is domestic.

Other than that, I cannot think of other factors to mention.

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?

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(106 replies, posted in General Discussion)

Kris,

My brother, sister-in-law and my husband will meet with both Dr Fong and Dr. Kemeney the coming Monday. I will suggest asking where the leak is going and the possibilities thereafter.

The chemos that my brother has been on are as follows:
(1) First combination of: Gemcitabine and Oxaliplatin
(2) Then Gemcitabine and Capecitabine(Xeloda)
(3) Now Gemcitabine and Erbitux

He has had liver embolization, Nano-knife, Gall bladder removal and HAI pump installation - Done by Dr. Fong. So far the main concern has been the effectiveness of chemo in shrinking the tumor and lymph nodes.

We also sent the samples for chemo sensitivity assay testing to Rational Therapeutics and the result showed resistance to 5FU, Gemcitabine and Cisplatin alone. However there is some synergy when these drugs are given in combination. It would be good if members can also weigh in on this- whether drugs actually do not work if the chemo-sensitivity testing says so. Dr. K was not so keen on that, but Dr. Fong thought with chemo not being effective in shrinking the tumor for last couple of months to allow him to attempt resection, the window of opportunity was shrinking. So he  he was fine with chemo sensitivity testing and proceeded with nano knife.

Now coming to back to chemo, and pump, Thanks for your input, we would ask where is the leak going (Dr Fong), and what chemo is being planned through the pump (Dr. K).

Because, my brother has not had results he was hoping from chemo, as well as the pump now has a leakage, and now he notices a tumor like growth on his scalp that was tested last week, he has been very very down for months. Also being an international patient from India, away from his kids and in NY for 5 months and paying for his own expenses, has been very hard on him.

When I visit NY in 10 days, one of the things on my agenda is to show your posts to hopefully pump him up a bit.  I will give him your PACMAN idea :-)

-Jyoti

11

(106 replies, posted in General Discussion)

Thanks to Kris and others for sharing their experience with HAI pump. Reading these posts gave me much needed hope.

My brother had an HAI pump installed at MSKCC by Dr Fong. There seems to be some leakage, which still persists after attempts to fix them.

His oncologist Dr Kemeney suggests we can try a low dose of chemo through the pump and see what happens. This is what is making my brother very scared.

Prior to that, from MArch 2012 to June, 2012 the systemic chemos have not been very effective in reducing the tumor or lymph nodes. In June, 2012 Dr Fong did embolization using nano-knife. That is when he also installed the HAI pump which is having the leakage.

I would appreciate any pointers, similar experience that would help us decide whether to go with chemo delivered via HAI pump despite the leak using the low dosage. What kind of questions should we ask Dr Kemeney? Can the leak be quantified? Or is the pump a failure now?

Thanks.