tvvenky

Eli,

Thank you for the info. I guess it will be fingers crossed for now, to see how this treatment pans out.

regards
venkat

Kris:
I hope that you’ll get a second chance at resection soon! I’ve begun to realize how much that hope means..

dmj4ctj:

I just thought I’ll chime in. My friend who’s 58 years old has been battling CC since Apr 2012. He’s not a LT candidate due to size of the tumor, and surgery is ruled out at present because of portal vein involvement.

We are also hoping that the chemo will shrink his tumor and relieve itself from around the portal vein to where resection is an option. He’s getting chemo (only a couple of sessions of gemcitabine so far) at Moffitt, and they have never mentioned this as a possibility. However, when we went to see the doctors at Mayo Jacksonville, they asked us to go ahead with the chemo, and said they would be willing to review his progress via the CT scans to evaluate surgery as a possibility.

As to your other concerns, my friend was also denied chemo initially for an aggravating period of a month on account of elevated bilirubin counts. In his case, what eventually helped was repeated tries at stenting, first internal ones that slipped into the intestines, were removed, then replaced with external drains, one on each side of the liver. Those leaked twice, more delays, but finally now, the external drains seem to be holding up (touching wood as I type this)

Most recently he was held off chemo due to elevated creatinine levels. It’s been a frustrating road for him and his wife, and I wonder at where they get their strength and resilience from.

Stay strong and as others on the forum have advised, don’t hesitate to get second and third opinions, and continue to ask questions. Never hurts to ask.. write down the questions as they pop in your mind in the wee hours of the night, so you have them handy to barrage your husband’s doctor with!

I wish your husband the very best.

venkat

I’m posting on behalf of a friend who’s recently been diagnosed with cholangiocarcinoma. He was diagnosed in April 2012, he has a single tumor that is impinging on the bile ducts, including secondary ducts, on the left and right sides of the liver (which is why the doctors at Moffitt Cancer Center have presently ruled out resection). It has not metastasized.

The initial internal stents seemed to work for a week or so, but then the doctors deemed the stent to have slipped, and inserted two internal stents, one each on the left and right sides. That didn’t help much either, and now my friend has two external drains. The good news is that his bilirubin is finally dropping this week, slowly (now 8.5 or 8500).

We have been wondering why liver transplantation has not been considered as an option for him, and I came across this topic as well as this link: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3095469/
that references the “Mayo protocol” and it’s success.

Since no one seems to have posted on this topic for a year now, I was hoping to rekindle the discussion – any recent experiences related to liver transplants, advice and/or opinions will be most welcome.

Again, thank you very much for all the help and support.

venkat