Cholangiocarcinoma

richnkim said:

Stents

I don't know alot about stents my husbands has never had to have them but my understanding of them is if the bilirubin isn't going down then they are either to small, clogged or not working properly. As for the swelling in the groin area my husband did have that and they said that was from the tumor pressing on vessels cutting off blood flow and the only thing that cured that was chemo to shrink the tumor. He was also put on diuretic to help with the swelling in his feet. As for immuntherapies they are your best bet in beating this cancer but the thing is to get on a clinical trial you first have to have chemo then either have growth on chemo or can no longer handle chemo before you are able to enter a trial. Then you have to be healthy enough to be in the trial, bilirubin has to be a certain number,platelets,etc. Also most trials go by what mutations you have. Right now my husband is in a trial with one of the mutations he has. Do not hesitate to get second or third opinions on treatments this is a rare cancer and you need to be going to a cancer hospital that knows about this type of cancer. We've gone to 3 different ones and are doing the trial at 1 of them. I wish you the best.

Thank you very much, richnkim. His bilirubin seems to go down as of today, however the swelling has not decreased much even though he is on mild deuretic. I am currently working with his oncologist about the refferal to a clinical study. Will keep an update here once there is more news. I am not letting him go, not giving up ever. 

MyJourneywithCancer said:

Hello arsadyhyan,
Apology for the delay, but how is your father doing, if I may ask?
To supplement excellent suggestions by richnkim, if not already done, I would recommend to send the biopsy samples for the genetic profiling with a hope that some targeted therapy can be started ASAP. Given the condition of your dad, we need something that works fast.
Each case is different, but his bilirubin overshoot reminds me off my wife's situation last Nov-Dec: the number went sky-rocketing from 1.5 to 2.7, 7, 22, 31 by every 10 days, together with other liver function enzymes like ALT and AST. She had stomach swelling as well, lost one-fourth of her weight in 3 months, and completely bed-ridden. Stent in the bile duct really helped her, but we were lucky that she responded to kinase inhibitor combo against one gene that was found mutated, BRAF. The early turning-around was visible in matter of weeks, and it took about two months to restore her liver function. She is continuing her well-being and job since.

Thank you for the response, MyJourneywithCancer.

Over the past couple weeks we have had his bilirubin drop down to 7.6, then rose to 14.5, back and forth. Interventional radiologists confirmed that stents are wide open and bile ducts are less dilated. Another important and interesting thing: 3-phase CT scan showed that his lesions in liver did not grow from what they were 4 months ago and cancer did not spread to any other parts of the body. The major blood clot that he had around portal vein has been dissolved as well. However for some reason bloat in the stomach and swelling in the legs is still in place. ALT and AST are actually better than they were 2 months ago. His oncologist is extremely pessimistic towards prognosis as he has always been, stating that his malnutririon status and high level of bilirubin are standing in the way of him doing the treatment. I have started him on Laetrile B-17 over a month ago and I believe that is smth that might have helped the lesions not to grow, but I could be wrong. I plan to speak to another hepatologist and another oncologist tomorrow to get a second opinion. Any suggestions will be appreciated. Thank you.

Hello arsadyhyan, is your father on any blood thinners? Rich also had a clot around his portal vein which caused swelling in his scrotum and his legs and intill he was on the blood thinners the swelling would not go away. Now even though the clot is gone if he goes off the thinners his legs will start to swell up even though he is also on a diuretic. His Dr says this kind of cancer likes to throw blood clots so it's best to just keep him on the thinner anyway,but still there is no reason that they can come up with why when he's taken off of them that his legs would start to swell again. As for the bilirubin I have no ideas, we just ran into some issues ourselves here with some dark urine and light colored stools suggesting maybe a blocked bile duct, all test came back fine so we are blaming it on a new drug they gave him for joint pain (Celebrex)that he was having from a side effect of the trial drug that he is taking. Keeping our fingers crossed that is all it is. Hoping you get some answers and your father gets some relief.

richnkim said:

Clinical Trial

Rich is in clinical trial INCB054828 for mutation FGFR2 at UW Madison Carbone Cancer Center in Wisconsin with Dr.Sam Lubner. He started the trial June 29th and at that time his CA19-9 was 282 and is now 97 his last CT Scan was in Aug and it showed 10% shrinkage of the tumor on his liver and the lung nodules,he is due for another CT Scan this week. As for side effects-joint pain,tired-not really a whole lot nothing compared to when he was on chemo. We have joined a Facebook group of people who are on this trial and some of the side effects those people are experiencing are hair loss,finger nail loss,mouth sores,skin peeling on hands and feet (Rich did have this on his hands but we have this under control now)high phosphate levels but,as you know drugs effect each person differently. Other than that Rich is doing great,eating fine,has not lost any weight,goes fishing and kayaking,car shows,we took our 11 year old to Disney in Florida for 10 days in July,he rides a bike or goes for a walk each day usually a couple a couple of miles.

So has your Dad sent his tumor biopsy to a lab to see about mutations for a clinical trial yet? If not I think that should be the next step because chemo is just to hard on the body. I wish you the best.

 

 

where on facebook can you advise r u still on treatment thank you best of luck

richnkim said:

Hi Sheldylynn4117,

Hi Sheldylynn4117,

My husand was diagnosed with Stage 4 Intrahepatic Cholangiocarcinoma (bile duct cancer) with mets to the lungs Jan 2017. He too has alot of stomach trouble. I'm not sure if it's coming from his gall bladder,the tumor,chemo or whatever it does bother him. For nausea we use the usual meds from the Dr but he eats ginger snap cookies after he has chemo and that helps alot. I ate these when I was pregnant  and had morning sickness so I knew that they worked. As for the gasiness he takes Beano or gas-x and that helps,sometimes he will take a Tums too. It seems to be hit or miss between the three. As for foods he will not eat any beef he can not tolerant the smell or the taste of it, it has to do with the fat the liver does not want it. So we eat alot of chicken and fish. Mostly bland food. He tries to stay away from sugar and eats small meals thoughout the day. He has been eating some protein bars and he does a supplement smoothie each night. So what are you doing for treatment?

Rich n Kim, are you still here by chance? Hope so! Just finished the first 3 weeks of chemo, and am seriously hoping someone has survived this cursed disease. Thank you for all your informative comments in this thread. Bless you!