Cholangiocarcinoma

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?

Yes,there are people out

Yes,there are people out there who are beating this. First thing I would do is get a sample of the tumor to Foundation One lab to see what gene mutations he has. Yes you want clinical trials that is the way to go. If you pull in a certain mutation there is a drug called Keytruda that is curing cholangiocarcinoma,my husband is going to the Univ of Chicago this week to see about a trial they have for this drug and we are praying he can get on this trial,as he can no longer take chemo.

This is my first post.
This is my first post. My wife has been diagnosed in September last year with a stage 4 disease in bile-duct/liver (originally diagnosed as Cholangiocarcinoma/Hepatoadenocarcinoma), lung, adrenal, and lymph nodes, and later categorized as with unknown primary. Her disease was unresponsive to initial attempt with chemotherapy for 3 sessions (oxaloplatin and 5FU combination). During chemo, the wild swings between constipation and diarrhea were very hard to manage; nutrition and dehydration were real concern. After multiple fluid removal from lung, and bile duct stent placement, the situation did not improve: she was completely bed-ridden, and the numbers for her liver function tests were sky-rocketing. Her first oncologist said it was matter of weeks. Luckily, her liver biopsy was found to have BRAF V600E mutation, and, as an only resort, she was put on BRAF and MEK inhibitors. Within weeks, that made a visible difference! Five months and two scans later, she is continuing to respond to the targeted therapy. My three cents: (a) get the most aggressive oncologist you can; (b) genetic mutation, micro-satellite stability, tumor mutation burden studies may lead to effective treatment avenues; (c) do not give up. I wish you good health.

Hello RichnKim,
Hello RichnKim,
Novartis' Tafinlar® (Dabrafenib) and Mekinist® (Trametinib). They are BRAF and MEK inhibitors, respectively. The first works against BRAF activating mutation such as V600E (what she has), and addition of the second is known to reduce side-effect and resistance. Best wishes.

Hello Feramire

Dear Feramire,

Welcome to the forum, and I am so sorry to hear what your family is going through. I do not know how to answer your question, a more experienced member here might help.

Do you know your sister has BRAF activating mutation? Otherwise the inhibitors are not right choice.  

Did you try signing her up into a clinical trial? Here are a few:

1.       https://clinicaltrials.gov/ct2/show/study/NCT02632409?recrs=a&type=Intr&cond=cancer&cntry1=SA%3ACL&age=1&draw=1&rank=23&show_locs=Y#locn

Fundacion Arturo Lopez Perez    Recruiting

Santiago, Metropolitana, Chile

Contact: Pamela Salman, Site 0099    +5624457254     

 

Instituto Oncologico Clinica Renaca          Recruiting

Vina Del Mar, Valparaiso, Chile, 2540364

Contact: Pablo Gonzalez Mella, Site 0038    +56322891219     

 

Clinica Alemana de Temuco S.A.                Recruiting

Temuco, Chile, 4810297

Contact: Felipe Rey, Site 0137    56452201611

 

2.       https://clinicaltrials.gov/ct2/show/study/NCT03143153?recrs=a&type=Intr&cond=cancer&cntry1=SA%3ACL&age=1&draw=1&rank=24&show_locs=Y#locn

 

3.       https://clinicaltrials.gov/ct2/show/study/NCT02702401?recrs=a&type=Intr&cond=cancer&cntry1=SA%3ACL&age=1&draw=1&rank=44&show_locs=Y#locn

Merck Sharp & Dohme (I.A.) Corp.	Recruiting
Santiago, Chile
Contact: Maria Elena Azara Hernandez

  

If you are around Santiago, Universidad de Chile and Pontificia Universidad Católica de Chile are the places you may want to look.

I wish I could do more.                                          

Best wishes.

You are most welcome

Apart from chemo, there are two broad treatment choices: targeted therapy (for which mutation needs to be identified) and immunotherapy (which acts by reducing "brakes" from immune system).

For the former, I would talk to the oncologist about sending the biopsy samples for genomic profile. Two US based companies are: Foundtion One and Caris Life Sciences.

For the later, a clinical trial will be ideal. Since Cholangiocarcinoma is not that common, in the search I was trying less specific terms such as "advanced cancer" or "solid tumor". So, even the trials sound little distant, I would try to contact the centers to clarify the eligibility.

Best regards,

Hi

If big meals are problem, she can try small portions, like multiple snacks, and different things. Carbohydrate and protein rich. Avoiding fat may be a good idea for now. Never before, I bought breads looking at calories per serving, but I did when my wife was under chemo. If your sister likes milk shake, you can add milk powder in the milk as extra protein, for example. Every calory counts. Also, enough fluid, and food adjustment for smooth bowl movement: include fruits and vegetables, if she has constipation.

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.

 

 

Blood sample

Guardant360 does their mutation testing with a blood sample,that might be a way to get it done since there wasn't enough tumor from the biopsy. I wish your dad the best in whatever treatments he decides to go with,it seems this cancer is hard to beat.

Need advice

Hello.

 

My Father has been diagnosed with Cholangiocarcinoma in May 2016. He had a procedure same month and large tumor was removed. He was following up and even 6 months after all margins were negative and everything turned out to be well so far. When he came for another follow-up in June 2017, he was informed that small masses reappeared within liver. Biposy confirmed positive for malignancy. They did another biopsy on his lungs and that one came in negative. His bilirubin level at that time was normal, then while doctors were deciding on how to target the treatment - bili grew to 6 and eventually 18, making him yellow. We went to ER, they placed 2 outside drains and said that those small formations are blocking bile duct. That did not help much, bili was fluctuating between 16 and 19. Then bili rose to 31 due to tubes being too small and one got clogged. They upsized the tubes and placed the third drain. It worked well and bili dropped to 17. Then they placed 3 stents and removed outside drains, leaving him only inside ones-he tolerates it well so far (yellowness is Not increasing). Meanwhile, his stomach was growing little by little, Ultrasound confirmed it is Not liquid, but only gas. However right after stent placement he developed swelling in groin area and his feet. Doctors blame swelling on poor nutrition and low albumin level due to him being in a hospital for a long time. They are not clear about the stomach bloating. The decease in liver is not growing fast according to images and doctors assure that it is not the result of bloat and swelling, but what is that then? We are yet to observe how his stent are working and if bili decreases, but I would like to find out of anyone had this situation and what has been done in order to address it. He cannot start chemo or radiation until bili goes down at least to 5-6 level. Are immunotherapies a good idea? What side effects do they have? I am not sure what mutation does he have. He really wants to live and I am not letting him go either, he is just 57. Please help me with an advice on what to do. Thank you in advance.