pcl1029

Hi,
I agree with Lainy to seek a 2nd opinion for your case.

“there is one branch of the bile duct in the liver that just disappears for a short space in one scan slice.”-to me that means you have a bile duct stricture on that spot .It may or may not be a tumor but the chance is high because of the”biopsied swollen lymph nodes and found Adenocarcinoma cells.”you mentioned.
“my history of Ulcerative Colitis”-this is a common disease factor that associated with cholangiocarcinoma development like PSC and is especially in the younger age group between 30-50 years old.

May I ask how old are you?
Did you know how big is your leison?left or right side of the liver ? and is it near any major blood vessels(portal vein or artery)?
Where is the affected lymph node located?
Have you already have CAT Scan or PET scan in addition to the MRI with contrast ?

In general ,tumor growth doubles its size in 2-3months,some are slower and some are faster;normally CC is a slow growing tumor;but if I were you,(BTW,I am not a doctor,I am a CC patient also.) I will seek a 2nd opinion in Mayo clinics in Minnesota for it’s NO.1 ranking in GI cancers;or go to MD Anderson for it’s reputation of NO.1 ranking in oncology ;or go to John Hopkins for it’s No. 1 ranking in the past 20 years the best overall hospital care in the States.
To wait 2 more month seems ,for me as a patient, is a long time of uncertainty that will drain my energy and hope,not to mention the change of the size of the leison in the liver if it may be CC.

Finally ,I did read your comment about your doctor.it sounds impressive. but the BEST choice of where to seek the best treatment ultimately is on your shoulder ALONE. We,members on this board,by God’s design,can only suggest base on the best that we know how to help a fellow man or woman ,whether we are patients or caregivers and nothing else.
God bless.

Hi,Jamie,Below the info is from ” Drug information handbook for Oncology”.

Irinotecan(Camptosar) received FDA boxed warning as following:
Severe diarrhea may be dose-limiting and potentially fatal;two severe(life-threatening)forms of diarrhea may occur. Early diarrhea occurs during or within 24hrs of receiving irinotecan and is characterized by cholinergic symptoms(ie: increased salivation,diaphoresis,abdominal cramping);it is usually responsive to atropine.Late diarrhea occurs more than 24hrs after treatment which may lead to dehydration,electrolyte imbalance,or sepsis; it should be promptly treated with loperamide. Colitis, complicated by ulceration,bleeding,ileus,and infection has been reported.
Early diarrhea (43-51%;grade 3/4:6-22%)
Late diarrhea (83-88%;grade 3/4=6-31%)
Grade3=7-9stool/day; Grade 4=>10stool/day.
God bless.

Hi,
You are welcome.
May I ask where do your mom and you live?
1.If you can,the most important thing to do NOW for your mom is to schedule and have a “CAT SCAN with contrast agent of the chest,abdomen and pelvis” to get a completed picture of your mom’s current internal organ condition.(sonogram,do you mean ultrasound.? if so,then you really need CAT SCAN to make a better diagnosis for you mom.) ; A PET scan is even better at this point since your mom had the problem since last year.
Current medical articles indicated that patients,depend on their general medical condition, who are on biliary stent alone can extend their survival from 3-6 month to 16-21 months with PDT radiation.
2. Make an appointment to see BOTH an “intervention radiologist ” and an oncologist AFTER you get the CT scan result.GI specialists and surgeon cannot provide the current specialty oncology knowledge and that is why you need to bring your mom to see an good oncologist who know about cholangiocarcinoma (CC).(even a general oncologist may not completely familiar with CC,not to mention doctors in other specialty such as GI doctor.)
Keep us inform and if you wish,you can email me.
God bless.

Keep in touch.
God bless.

Hi,
How old is your mom and do you know it spread to other parts of the body?
What stage of the tumor?if you can provide info.I appreciate.
God bless.

Hi,
I am not a doctor but a CC patient for 2years.
I believe ,based on the info your provided,the tumor has spread from the common bile duct to the liver ;depending on the location and size of the tumor spreading and the involvement of the portal vein and hepatic artery occlusion, and if it metastasized to other part of the body,the surgeons will not operated on the patient. Of course age and general health condition are also risk factors for considering treatment options .
Base on my estimate,your mom had the Klatskin tumors for at least 9 months;during this time,Had she had any CAT scan or MRI to follow her condition?Did she only has ultrasound and MRCP ? What specialty of the doctor was in charge of ordering these procedure? A GP or GI specialty doctor?
Did you mom has oncology consultation for the possibility of receiving chemo?
What specialty is the doctor who would not offer chemo and do you know why?
Is it the radiologist saying that you mom can have radiation but why still not finalized the radiology treatment plan?

In general,systemic treatment (chemotherapy) is the choice of treatment if the tumor has metastasized and cannot be operated unless patient is not fitted for chemo (poor health condition,low blood count,other health issue etc.) ;PDT and/or chemo/radio embrolization and clinical trial are options depending on the outcome of the

If I were you, I will find out the answers of the above questions? If you don’t know the answers and or confused or .Get a 2ND OPINION from the medical institutions which specialized in CC treatment.(depend on where you live?)
East coast -John Hopkins;west coast-UCSF or MD Anderson(MDA) in Texas;mid west-Mayo clinics and down south MDA in Florida. There are other hospitals too but because of the limited info you provided,I will just recommend these.

I my self is a CC patients,I look no different than other healthy persons at work,or on the street.Especially if the bile ducts are not completely blocked(intrahepatic CC);the patient looks pretty normal to the people who see the patient every day.The patient may feel tired a bit,but it does not indicated that the cholangiocarcinoma is not growing inside if patient received no treatment at all .(Stent is not a treatment for CC,it is a procedure only to keep the bile following)
Keep in touch.
God bless.

Of course

Hi,
Roswell Park Cancer Institute in Buffalo New York initiated and provided one of the current clinical trial using Gemzar/Xeloda/Avastin protocol to treat ductal CC.
It is also a medical research center.
God bless.

Hi,
Gemzar/Cisplatin is the first-line chemotherapy for CC.
if you want to know more about this chemo treatment,you can go to this web site,look under the chemo treatment in the experience forum,you will find “the general information for 1st time gemcitabline/cisplatin TX”. It may provide you some basic info. on that regimen.
God bless.