Cholangiocarcinoma, gas pain

[Jairi]

My mom has type II liver cancer, papillaris bile cell duct tumor (cholangiocarcinoma) she had been doing great, but know she feels full all the time, water makes her nauseas, and at this moment has debilating upper right side pain. She says it feels like gas. What can I do to ease her pain? I gave her hot anise tea, I have been placing warm towels on her. It's terrible to see that way. Please send suggestions.

[Mike194962]

I have to practice what I preach to others, you can't take care of anyone if you don't take of yourself. Been trying to do that. It's so devastating to our kids too. Thank you for your kind words.

[fntn]

I'm very sorry to hear that they weren't able to do much more. This is such a nasty, silent/sneaky cancer and that makes it so hard to treat. You're keeping him as healthy and pain-free as possible and hopefully there will be much more good quality time still left. And keep yourself healthy too, this must be taking a toll on you as well.  

[Mike194962]

As I suspected, the Winship Cancer Institute wasn't able to offer anything more than our local facilities. The cancer has spread beyond the liver. He is now receiving hospice and refused chemo. They are a great hospital and everyone we dealt with were amazing. I would recommend them to anyone, although the traffic in Atlanta was terrible.

[Mike194962]

The only new meds are for pain. He does have ascites and goes for paracentesis once a week.

[fntn]

It could be due to a couple of things. Have his doctors started him any new medications? That would be the simplest cause of course. But it could also be due to cholestasis, if his CC is causing some form of bile flow obstruction. You will note this through elevated bilirubin and ALP levels and, if he's showing signs of jaundice, then he has a great deal of impeded bile flow.

I get this myself from time-to-time since I have "sludge" throughout my liver and small stones that pass through my biliary system. I can feel it to a degree with the dull aches in my right upper quadrant, just at the bottom of the ribs. And it also causes me a little bit of nausea most of the time when it occurs, and a lot of nausea with vomiting some of the times. When this is going on, eating and even drinking is difficult with just the smell of things making me queasy. In my case, it passes as the obstruction abates and then things return to normal.

On another note, his CA19-9 level is only modestly elevated and his CEA is normal. This is good but we can't read to much into it since these tumor markers are very loosely tied to his CC. His doctors will be likely using them to track things and the effectiveness of any treatments. Let's hope that his cancer is not behaving aggressively and your upcoming meeting with the Liver Tumor Team at Emory can provide you options.

Hoping for the best, take care!

[Mike194962]

I started a new thread about this but maybe you or someone can answer here. My husband's sense of taste and smell has dramatically changed. Nothing tastes right and everything smells like chemicals. I changed to unscented cleaning supplies ie detergents etc. He said it makes him sick. Is this typical?

[Mike194962]

CA19-9 was 141 U/ml, CEA 0.8 ng/ml

[fntn]

I forgot to ask, do you know what his CA19-9 and CEA serum levels are at?

[fntn]

Wonderful! Push them hard to make them stretch and think out of the box. This is a nasty cancer that requires an aggressive approach - no waffling or hesitation, wait and see type of stuff doesn't work. Don't worry about stepping on toes and, if they can't give you clear answers, don't be afraid to get yet another option. Mayo will sometimes even do a remote consult with you if the trip is not an option.

Hoping for the best and don't hesitate to ask us any questions if your doctors leave you with fuzzy answers. I've leaned on my doctors quite a bit over the past year or so with my own ICC questions, drove my first surgeon crazy. And when I didn't like his approach, went out and got another surgeon and team.

[Mike194962]

We have an appt with the Winship Cancer Institute at Emory in Atlanta at the end of this month. I hope it won't be too late.

[fntn]

I'm sorry to hear his cancer is so advanced. That's the big problem with ICC, it's kind of quiet as it sets in, and then the doctors aren't aware of it until it's advanced.

Since the cancer has spread, based on the IVB staging, most doctors will be limited in their approach. But be sure to touch base with all the major hospitals, especially MAYO and the Cleveland Clinics, number 1 and 2 in gastrointestinal cancers/issues. Best wishes.

[Mike194962]

Here is what the diagnosis says "Intrahepatic bile duct carcinoma" Stage IVB

[Mike194962]

They didn't go into all those details but did say it was non-resectable.

[fntn]

Is the tumor in the hilar region of the biliary tree and roughly 3 cm or less? They may refer to it as a klatskin tumor. I hope it is and this may allow for a rare liver transplant wrt it being cholangiocarcinoma. Normally a LT is not an option with CC but they have had success with this but only when it is located in this region. How high are his CA1-9 levels?

Even if it is a bit larger, they can hit it with chemo and radiation to reduce the size and then allowing for surgery. Good luck with this, hoping for the best.

[Mike194962]

We were told that without chemo 3-6 mos. With, maybe 9 mos to 2 yrs if he responds. We are now looking into a treatment that is done at Emory Institute in Georgia. There are only two hospitals in the country that do it. His dr has to make a referral and then they will decide whether he is a good candidate.

[Mike194962]

I'm sorry. I just nticed the date on your post. I hope that everything turned out ok for your mom.

[Mike194962]

We haven't seen the oncologist yet. Just a call from his dr saying there was cancer in the liver and it most likely started in the gall bladder or pancreas. We also got a letter saying that cholangiocarcinoma was suspected. That's all we know right now. I imagine there will be more testing to determine which region it is in. He is very miserable with the side pain and the fullness. I did post a question on this forum titled Tumor markers before we got this diagnosis.

[fntn]

I noticed another recent posting where you mentioned a biopsy and slightly AFP levels? Have the doctors been able to do more diagnostic testing since then? And have the pathologist been able to actual get the CC cancer cells in the biopsy sample? Whether your husband's tumor in the hilar region or is a peripheral type can have a bearing on options as well.

I've struggled with this scenario for a while myself. Large tumors and elevated tumor markers with lots of biopsies. But it is very difficult to get a positive confirmation with cholangiocarcinoma as you probably know.

[Mike194962]

Hello. My husband was recently diagnosed with this type of cancer but hasn't seen the oncologist yet. He has gone twice since Dec. 4th to have the fluid drained from his stomach. He is on pain meds but they don't fully take away the pain. He will be going again this week to remove more fluid. His gastro dr limited him to one liter of fluid per day and no salt. Hopefully we will see the oncologist very soon and then he can make a determination as to what type of bile duct cancer it is and how far it has spread. He has lesions on his liver and had a biopsy. That's when we got the news. He had started out with bloating and cramping, change in bowel habits and loss of appetite, due to filling full. He lost so much weight that he lost his wedding ring. If I were you, I'd talk to her dr about removing the fluid. It should make her feel a little better. Good luck to your mom.