Puzzled about a few things

Hi There with a word about stents. Curious if the Docs mentioned external stents? They can usually be guided in from the side by the Radiologist. It's better than being Jaundice. Next, listen to your GUT, there is nothing wrong with seeking another opinion and we heartily reccommend that especially when in doubt. Sorry, can't help on the chemo but I know others will be along shortly. Sending tons of best wishes for you both.

Thanks for both your quick replies!  Indeed, I am very happy he got the chemo and his bili came down and hopefully will continue to go that direction.  Doctor said there had to be some shrinkage of tumor from bile ducts or we wouldn't have this positive result.  Thanks Marion. 
Lainy as far as stents go, I'm not sure I know where external stents go??  The way one of the gastroenterologists explained it, the blockages are very high in the biliary tree, stents go lower (in the trunk or lower branches so to speak).  We asked if an interventional radiologist could help, but both gastroenterologist and oncologist told us no.  Doctor told us that the next step would be chemoembolization.
BTW, we did get second opinion from an oncologist who specializes in pancreatic/biliary tract cancers and she also felt that surgery is not an option as the size and location of the tumors would require such an extensive resection that it would be impossible to leave 20% of the liver which is necessary for life. Just wondering if the tumors shrunk???

dmj4ctj:
From my personal experience: I have been denied chemo when my bilirubin was 4 and I have never been jaundiced. And different chemos work better on different tumors. Some better than others. Oxy worked wonders on my tumor.
When I was diagnosed, I was told the tumor was unresectable, but if it shrank, we could revisit the decision. I was finally told it was resectable, but unfortunately I ended up with pneumonia so the resection was cancelled. The tumor grew just enough and metted to the lymph nodes so I was denied surgery again. So, to answer your question, yes, chemo can be denied or adjusted based on bilirubin. And prognoses can change. Unfortunately, I have no knowledge of stents, so can't help you there.
If I were you, I would decide how much I like the dr. Based on his decisions, do you feel comfortable with his answers? If not, get copies of the latest couple of CT scans, etc., blood work and whatever else you need and go see someone else. Then make an informed decision based on the new dr's opinions.
Personally, I do not like my onc. I have lost a lot of faith in her. Unfortunately, I have her pump implanted in my abdomen so it would be very difficult to change drs. I LOVE LOVE my surgeon, even if he does say right now surgery is not an option. I'm hoping that in a couple of weeks my new CT scan will show I can have surgery. If not, we try another chemo and try to get things to shrink more.
Good luck with your decisions and keep us posted.

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