Cholangiocarcinoma

arsadyhyan

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

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

arsadyhyan said:

Thank you very much, richnkim

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. 

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.

arsadyhyan

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,

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.

 

MyJourneywithCancer

Thank you for the update.
The facts that the lesions are stable and restricted to liver, and there are other signs of responses are encouraging. Given the consistent high total bilirubin, one further test that can give us little more information would be to evaluate "direct" or conjugated bilirubin. Good luck with your effort to get second opinion.

richnkim

Blood thinners

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.

RUDYST

incb054828

hi my husband is on this and experiencing terrible stomach aches what site on facebook are you reaching out too thank you so much and best of luck any more progress he is on phase 2 now thankyou

 

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RUDYST

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.

 

 

my husband i son this for bladder cancer as well mets

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

richnkim

INCB 54828

The Facebook group is called INCB 54828 Clinical Trial Patients,it's a closed group so you just have to ask to join. Alot of useful info on the trial and what each person is experiencing with side effects and how to deal with them. Hope this helps!

My husband has been on this trial since June, he has had 20% shrinkage of his tumors. CT Scan just done with everything being stable but, he is now taking a 2 week break from it because of all the side effects, which are joint and muscle pain and hand and foot syndrome,the skin on his hands look they have been burnt and all of it has peeled off leaving them raw and sore, Also is now losing his toe nails. So we are hoping with the break things will calm down and he can regain some strength. We he goes back on the trial drug it will be at a reduced amount.

Good luck to you on this trial,hopefully it will help alot of people.

Ariztokat

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

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! 

richnkim

New Clinical Trial

Rich was taken off the INCB054828 in Jan because of tumor growth, he was on this trial for 8 months and he had alot of side effects from it. After the month "wash-out" period he has started the TAS120 trial at Mayo in Rochester. The "wash-out" month was hard on him he had alot of pain and nausea with vomiting-this was the first time he had any vomiting since being diagnosed in Dec 2017 he never even had any while doing chemo. He has lost around 25 pounds but thankfully he had some "extra" on him so it wasn't to big of deal as long as it doesn't continue. So far on this trial he has his appitite back and gained some of the weight lost back,the pain has lessened and he has more energy so much so he's thinking about going back to work! He will have a CT Scan April 20th and hopefully this will show shrinkage. The only bad thing about this trial is he has to go weekly for labs and for us Rochester is a 9 hour drive away so that usually means we have to get a hotel room which is a added cost,so I got ahold of the American Cancer Society to see if they could help with travel expenses and they do have a partnership with some hotels up there and they were able to set us up with one at a reduced cost which helps out alot. So for now he's doing great considering his Dr's told him back in Dec 2017 that he had 3 months to live,just goes to show you they shouldn't put a death date on anyone there's only one person who can do that and I pray to him each night to let Rich stay with me and our son.