Cholangio Cell Carcinoma

My father was recently diagnosed with Bile Duct Cancer - Cholangio - Adeno carcinoma.  I had never heard of this type of cancer specifically. I had only heard of liver cancer.  It took them a while to come up with a diagnosis. Originally, he was in the hospital for supposedly lung cancer, but the biopsy showed negative. He was sent home but over the time, he was becoming jaundice. I demanded he got to the hospital. Anyways, he was admitted after more tests were done. He was in the hospital for nearly two weeks or more before they came up with this diagnosis. They put a stent in but now they have to go drain him again. They told us that the stent was not working so they have to try it again. I do not know if it is the inexperience of the doctors or what in ref to placing the stent. They told us if they cant stop the fluids, he is going to die. My dad was so overwhelmed with this news this weekend that we thought he was going to die then. We had all gathered at the hospital, and the doctor came in and basically repeated it. I felt really down, but I begin to read all these posts on the site. We are not giving up. He is going down as I write this, to have the fluid drained. I pray that the stent works this time. The doctor said that the space is becoming smaller. They started chemo last week (Gemzar), and they plan to do radiation for 4 to 6 weeks (5 days/week). I am just wondering if we should get him to another place. I am headed to Sloan Kettering outpatient center in Rockville Center to see if I could get an appointment for him to get a second opinion or something. I am feeling a bit lost and I dont how to proceed.  Right now, my father is at Nassau County University Medical Center in East Meadow, NY in Long Island.

We are all afraid.

On 3/16/2009 Janesi wrote:

My father was recently diagnosed with Bile Duct Cancer - Cholangio - Adeno carcinoma.  I had never heard of this type of cancer specifically. I had only heard of liver cancer.  It took them a while to come up with a diagnosis. Originally, he was in the hospital for supposedly lung cancer, but the biopsy showed negative. He was sent home but over the time, he was becoming jaundice. I demanded he got to the hospital. Anyways, he was admitted after more tests were done. He was in the hospital for nearly two weeks or more before they came up with this diagnosis. They put a stent in but now they have to go drain him again. They told us that the stent was not working so they have to try it again. I do not know if it is the inexperience of the doctors or what in ref to placing the stent. They told us if they cant stop the fluids, he is going to die. My dad was so overwhelmed with this news this weekend that we thought he was going to die then. We had all gathered at the hospital, and the doctor came in and basically repeated it. I felt really down, but I begin to read all these posts on the site. We are not giving up. He is going down as I write this, to have the fluid drained. I pray that the stent works this time. The doctor said that the space is becoming smaller. They started chemo last week (Gemzar), and they plan to do radiation for 4 to 6 weeks (5 days/week). I am just wondering if we should get him to another place. I am headed to Sloan Kettering outpatient center in Rockville Center to see if I could get an appointment for him to get a second opinion or something. I am feeling a bit lost and I dont how to proceed.  Right now, my father is at Nassau County University Medical Center in East Meadow, NY in Long Island.

We are all afraid.

Hello Janesi,

Two things I would suggest:

1. Get your Dad into into Sloan Kettering, they know how to handle Bile Duct Cancer.

2. Surgery is the best solution in handling bile duct cancer...chemo and radiation are not the best way to deal with this cancer.

3. Stents are used to help bile pass through the duct where the tumor is located.

By the way...what do the doctor's say about surgery?

Where is the cancer located...

Did the doctor say anything like intrahepatic or extrahepati?

I see the doctor said the space is getting smaller, what he means is the bile duct is getting restricted and not allowing the bile to flow down to the duodenum. 

This is a rare cancer and there are very few doctor's that want to deal with this situation...it is a very serious cancer....did the doctor say what stage the cancer was in??

Well bottom-line get your dad to SK NOW

Leonard from Alamo, California

On 3/16/2009 Solutions wrote:

 

On 3/16/2009 Janesi wrote:

My father was recently diagnosed with Bile Duct Cancer - Cholangio - Adeno carcinoma.  I had never heard of this type of cancer specifically. I had only heard of liver cancer.  It took them a while to come up with a diagnosis. Originally, he was in the hospital for supposedly lung cancer, but the biopsy showed negative. He was sent home but over the time, he was becoming jaundice. I demanded he got to the hospital. Anyways, he was admitted after more tests were done. He was in the hospital for nearly two weeks or more before they came up with this diagnosis. They put a stent in but now they have to go drain him again. They told us that the stent was not working so they have to try it again. I do not know if it is the inexperience of the doctors or what in ref to placing the stent. They told us if they cant stop the fluids, he is going to die. My dad was so overwhelmed with this news this weekend that we thought he was going to die then. We had all gathered at the hospital, and the doctor came in and basically repeated it. I felt really down, but I begin to read all these posts on the site. We are not giving up. He is going down as I write this, to have the fluid drained. I pray that the stent works this time. The doctor said that the space is becoming smaller. They started chemo last week (Gemzar), and they plan to do radiation for 4 to 6 weeks (5 days/week). I am just wondering if we should get him to another place. I am headed to Sloan Kettering outpatient center in Rockville Center to see if I could get an appointment for him to get a second opinion or something. I am feeling a bit lost and I dont how to proceed.  Right now, my father is at Nassau County University Medical Center in East Meadow, NY in Long Island.

We are all afraid.

Hello Janesi,

Two things I would suggest:

1. Get your Dad into into Sloan Kettering, they know how to handle Bile Duct Cancer.

2. Surgery is the best solution in handling bile duct cancer...chemo and radiation are not the best way to deal with this cancer.

3. Stents are used to help bile pass through the duct where the tumor is located.

By the way...what do the doctor's say about surgery?

Where is the cancer located...

Did the doctor say anything like intrahepatic or extrahepati?

I see the doctor said the space is getting smaller, what he means is the bile duct is getting restricted and not allowing the bile to flow down to the duodenum. 

This is a rare cancer and there are very few doctor's that want to deal with this situation...it is a very serious cancer....did the doctor say what stage the cancer was in??

Well bottom-line get your dad to SK NOW

Leonard from Alamo, California

 

 

 

Hi Leonard,

Thanks for your reply. The doctor said that he has cancer in duct area - cholangio cell carcinoma - adenocarcinoma. They have had problems putting the stent in. They released him from the hospital today, but he is supposed to be readmitted next Tuesday to put in stent. The also gave him his first radiation treatment.  Meanwhile, the fluid is building up. I went to Sloan Kettering this morning. We have to get back to them with his insurance info as well as get his medical docs from the other hospital.They mentioned that if he started radiation, they normally prefer they stay at that facility so I dont know if they will take my dad now.  My mom is afraid to go to sleep because my father seems uncomfortable.

The doctor mentioned Stage 3 or 4 because the cancer was not in the nodes and it didnt seem to have spread but that was told to us on last Monday. The doc mentioned that it was inoperable because of the location. His bilirubin was high then also, but now I dont know what it is. Since then, he has had a blood tranfusion and they were telling us that they have not been able to get the stent working.

At this point I dont know what to think.  

On 3/16/2009 Solutions wrote:

 

On 3/16/2009 Janesi wrote:

My father was recently diagnosed with Bile Duct Cancer - Cholangio - Adeno carcinoma.  I had never heard of this type of cancer specifically. I had only heard of liver cancer.  It took them a while to come up with a diagnosis. Originally, he was in the hospital for supposedly lung cancer, but the biopsy showed negative. He was sent home but over the time, he was becoming jaundice. I demanded he got to the hospital. Anyways, he was admitted after more tests were done. He was in the hospital for nearly two weeks or more before they came up with this diagnosis. They put a stent in but now they have to go drain him again. They told us that the stent was not working so they have to try it again. I do not know if it is the inexperience of the doctors or what in ref to placing the stent. They told us if they cant stop the fluids, he is going to die. My dad was so overwhelmed with this news this weekend that we thought he was going to die then. We had all gathered at the hospital, and the doctor came in and basically repeated it. I felt really down, but I begin to read all these posts on the site. We are not giving up. He is going down as I write this, to have the fluid drained. I pray that the stent works this time. The doctor said that the space is becoming smaller. They started chemo last week (Gemzar), and they plan to do radiation for 4 to 6 weeks (5 days/week). I am just wondering if we should get him to another place. I am headed to Sloan Kettering outpatient center in Rockville Center to see if I could get an appointment for him to get a second opinion or something. I am feeling a bit lost and I dont how to proceed.  Right now, my father is at Nassau County University Medical Center in East Meadow, NY in Long Island.

We are all afraid.

Hello Janesi,

Two things I would suggest:

1. Get your Dad into into Sloan Kettering, they know how to handle Bile Duct Cancer.

2. Surgery is the best solution in handling bile duct cancer...chemo and radiation are not the best way to deal with this cancer.

3. Stents are used to help bile pass through the duct where the tumor is located.

By the way...what do the doctor's say about surgery?

Where is the cancer located...

Did the doctor say anything like intrahepatic or extrahepati?

I see the doctor said the space is getting smaller, what he means is the bile duct is getting restricted and not allowing the bile to flow down to the duodenum. 

This is a rare cancer and there are very few doctor's that want to deal with this situation...it is a very serious cancer....did the doctor say what stage the cancer was in??

Well bottom-line get your dad to SK NOW

Leonard from Alamo, California

 

 

 

On 3/16/2009 Janesi wrote:

 

On 3/16/2009 Solutions wrote:

 

On 3/16/2009 Janesi wrote:

My father was recently diagnosed with Bile Duct Cancer - Cholangio - Adeno carcinoma.  I had never heard of this type of cancer specifically. I had only heard of liver cancer.  It took them a while to come up with a diagnosis. Originally, he was in the hospital for supposedly lung cancer, but the biopsy showed negative. He was sent home but over the time, he was becoming jaundice. I demanded he got to the hospital. Anyways, he was admitted after more tests were done. He was in the hospital for nearly two weeks or more before they came up with this diagnosis. They put a stent in but now they have to go drain him again. They told us that the stent was not working so they have to try it again. I do not know if it is the inexperience of the doctors or what in ref to placing the stent. They told us if they cant stop the fluids, he is going to die. My dad was so overwhelmed with this news this weekend that we thought he was going to die then. We had all gathered at the hospital, and the doctor came in and basically repeated it. I felt really down, but I begin to read all these posts on the site. We are not giving up. He is going down as I write this, to have the fluid drained. I pray that the stent works this time. The doctor said that the space is becoming smaller. They started chemo last week (Gemzar), and they plan to do radiation for 4 to 6 weeks (5 days/week). I am just wondering if we should get him to another place. I am headed to Sloan Kettering outpatient center in Rockville Center to see if I could get an appointment for him to get a second opinion or something. I am feeling a bit lost and I dont how to proceed.  Right now, my father is at Nassau County University Medical Center in East Meadow, NY in Long Island.

We are all afraid.

Hello Janesi,

Two things I would suggest:

1. Get your Dad into into Sloan Kettering, they know how to handle Bile Duct Cancer.

2. Surgery is the best solution in handling bile duct cancer...chemo and radiation are not the best way to deal with this cancer.

3. Stents are used to help bile pass through the duct where the tumor is located.

By the way...what do the doctor's say about surgery?

Where is the cancer located...

Did the doctor say anything like intrahepatic or extrahepati?

I see the doctor said the space is getting smaller, what he means is the bile duct is getting restricted and not allowing the bile to flow down to the duodenum. 

This is a rare cancer and there are very few doctor's that want to deal with this situation...it is a very serious cancer....did the doctor say what stage the cancer was in??

Well bottom-line get your dad to SK NOW

Leonard from Alamo, California

 

 

 

 

Hi Leonard,

Thanks for your reply. The doctor said that he has cancer in duct area - cholangio cell carcinoma - adenocarcinoma. They have had problems putting the stent in. They released him from the hospital today, but he is supposed to be readmitted next Tuesday to put in stent. The also gave him his first radiation treatment.  Meanwhile, the fluid is building up. I went to Sloan Kettering this morning. We have to get back to them with his insurance info as well as get his medical docs from the other hospital.They mentioned that if he started radiation, they normally prefer they stay at that facility so I dont know if they will take my dad now.  My mom is afraid to go to sleep because my father seems uncomfortable.

The doctor mentioned Stage 3 or 4 because the cancer was not in the nodes and it didnt seem to have spread but that was told to us on last Monday. The doc mentioned that it was inoperable because of the location. His bilirubin was high then also, but now I dont know what it is. Since then, he has had a blood tranfusion and they were telling us that they have not been able to get the stent working.

At this point I dont know what to think.  

 

Good Morning Janesi,

First of all I understand where you mother is coming from...I lost more sleep than my wife. You tend to have one eye open all night and respond to every move your love one takes.

I'm sorry to hear the doctor's at Sloan Kettering want your dad to stay put because of the radiation treatment. 

I understand Adenocarcinoma is a type of cancer that develops in cells lining glandular types of internal organs such as lungs,breast,prostate, stomach, pancreas and cervix.  I think you mentioned in your previous message that the doctor said your dad has bile duct cancer, so I'm assuming the Adenocarcinoma is located some where in the bile duct system. As you know the biliary tree starts in the liver and goes down to the doudenum where it joins with the pancreatic duct.

The issues with having a problem putting in a sent is not  good news. And the fact that your dad  has to go home for a week while the bile backs up in the liver and other areas of the body is also not news. Your dad may start seeing his urine turn dark yellow, that's the bile looking for places to go. The whites of his eyes may show a little yellow also.

Your second paragraph is not very positive news. I 'm very familiar with bile duct cancer in the extrahepatic ducts, I'm that familiar with what the doctor's said about your dad's cancer. But Stage 3 or 4 as your dad's doctor stated is not good. I also see you mentioned the cancer was not in any lymph nodes and it didn't spread...how do you know this?  Has your dad taken any CT scans?

A CT/PET scan would be most helpful. You mentioned the doctor said the cancer tumor was inoperable because of the location, again where is the tumor. This is why the radiation treatment. Normally the best way to deal with bile duct cancer is surgery.

Yes the bilirubin count would be high if it's not flowing to the duodenum...you say high, how high is high? when my wife was admitted to UCSF her Bilirubin count was 5.5, they considered that high and she was being drained externally. Your dad's doctor can put in a drain catheter  to allow bile to flow into a collection until the figure out just what they want to do. At least this will keep him free of bile backup. Naturally placing in a stent into the common bile duct is good because it will allow the bile to flow to the duodenum and inti the smal intestine...but in the meantime , they should want to stop the bile from backing up.

Why the blood tranfusion, did your dad loose blood or was the WBC low?

I really sorry to hear what's going on, bile duct cancer is a very serious matter...make sure you keep it in the hands of qualified doctor's...that is doctor's that do this on a regular bases.

Talk to you later...Leonard     

On 3/17/2009 Solutions wrote:

 

On 3/16/2009 Janesi wrote:

 

On 3/16/2009 Solutions wrote:

 

On 3/16/2009 Janesi wrote:

My father was recently diagnosed with Bile Duct Cancer - Cholangio - Adeno carcinoma.  I had never heard of this type of cancer specifically. I had only heard of liver cancer.  It took them a while to come up with a diagnosis. Originally, he was in the hospital for supposedly lung cancer, but the biopsy showed negative. He was sent home but over the time, he was becoming jaundice. I demanded he got to the hospital. Anyways, he was admitted after more tests were done. He was in the hospital for nearly two weeks or more before they came up with this diagnosis. They put a stent in but now they have to go drain him again. They told us that the stent was not working so they have to try it again. I do not know if it is the inexperience of the doctors or what in ref to placing the stent. They told us if they cant stop the fluids, he is going to die. My dad was so overwhelmed with this news this weekend that we thought he was going to die then. We had all gathered at the hospital, and the doctor came in and basically repeated it. I felt really down, but I begin to read all these posts on the site. We are not giving up. He is going down as I write this, to have the fluid drained. I pray that the stent works this time. The doctor said that the space is becoming smaller. They started chemo last week (Gemzar), and they plan to do radiation for 4 to 6 weeks (5 days/week). I am just wondering if we should get him to another place. I am headed to Sloan Kettering outpatient center in Rockville Center to see if I could get an appointment for him to get a second opinion or something. I am feeling a bit lost and I dont how to proceed.  Right now, my father is at Nassau County University Medical Center in East Meadow, NY in Long Island.

We are all afraid.

Hello Janesi,

Two things I would suggest:

1. Get your Dad into into Sloan Kettering, they know how to handle Bile Duct Cancer.

2. Surgery is the best solution in handling bile duct cancer...chemo and radiation are not the best way to deal with this cancer.

3. Stents are used to help bile pass through the duct where the tumor is located.

By the way...what do the doctor's say about surgery?

Where is the cancer located...

Did the doctor say anything like intrahepatic or extrahepati?

I see the doctor said the space is getting smaller, what he means is the bile duct is getting restricted and not allowing the bile to flow down to the duodenum. 

This is a rare cancer and there are very few doctor's that want to deal with this situation...it is a very serious cancer....did the doctor say what stage the cancer was in??

Well bottom-line get your dad to SK NOW

Leonard from Alamo, California

 

 

 

 

Hi Leonard,

Thanks for your reply. The doctor said that he has cancer in duct area - cholangio cell carcinoma - adenocarcinoma. They have had problems putting the stent in. They released him from the hospital today, but he is supposed to be readmitted next Tuesday to put in stent. The also gave him his first radiation treatment.  Meanwhile, the fluid is building up. I went to Sloan Kettering this morning. We have to get back to them with his insurance info as well as get his medical docs from the other hospital.They mentioned that if he started radiation, they normally prefer they stay at that facility so I dont know if they will take my dad now.  My mom is afraid to go to sleep because my father seems uncomfortable.

The doctor mentioned Stage 3 or 4 because the cancer was not in the nodes and it didnt seem to have spread but that was told to us on last Monday. The doc mentioned that it was inoperable because of the location. His bilirubin was high then also, but now I dont know what it is. Since then, he has had a blood tranfusion and they were telling us that they have not been able to get the stent working.

At this point I dont know what to think.  

 

Good Morning Janesi,

First of all I understand where you mother is coming from...I lost more sleep than my wife. You tend to have one eye open all night and respond to every move your love one takes.

I'm sorry to hear the doctor's at Sloan Kettering want your dad to stay put because of the radiation treatment. 

I understand Adenocarcinoma is a type of cancer that develops in cells lining glandular types of internal organs such as lungs,breast,prostate, stomach, pancreas and cervix.  I think you mentioned in your previous message that the doctor said your dad has bile duct cancer, so I'm assuming the Adenocarcinoma is located some where in the bile duct system. As you know the biliary tree starts in the liver and goes down to the doudenum where it joins with the pancreatic duct.

The issues with having a problem putting in a sent is not  good news. And the fact that your dad  has to go home for a week while the bile backs up in the liver and other areas of the body is also not news. Your dad may start seeing his urine turn dark yellow, that's the bile looking for places to go. The whites of his eyes may show a little yellow also.

Your second paragraph is not very positive news. I 'm very familiar with bile duct cancer in the extrahepatic ducts, I'm that familiar with what the doctor's said about your dad's cancer. But Stage 3 or 4 as your dad's doctor stated is not good. I also see you mentioned the cancer was not in any lymph nodes and it didn't spread...how do you know this?  Has your dad taken any CT scans?

A CT/PET scan would be most helpful. You mentioned the doctor said the cancer tumor was inoperable because of the location, again where is the tumor. This is why the radiation treatment. Normally the best way to deal with bile duct cancer is surgery.

Yes the bilirubin count would be high if it's not flowing to the duodenum...you say high, how high is high? when my wife was admitted to UCSF her Bilirubin count was 5.5, they considered that high and she was being drained externally. Your dad's doctor can put in a drain catheter  to allow bile to flow into a collection until the figure out just what they want to do. At least this will keep him free of bile backup. Naturally placing in a stent into the common bile duct is good because it will allow the bile to flow to the duodenum and inti the smal intestine...but in the meantime , they should want to stop the bile from backing up.

Why the blood tranfusion, did your dad loose blood or was the WBC low?

I really sorry to hear what's going on, bile duct cancer is a very serious matter...make sure you keep it in the hands of qualified doctor's...that is doctor's that do this on a regular bases.

Talk to you later...Leonard     

 

HI Leonard.,

I was not at the hospital to ask all those questions. My mom went there to visit him, and they decided to let him go home. I asked her to ask all those important questions. I just feel that she is just too passive in this situation. She is stressed. I called Sloan Kettering and gave them all my father's info this morning. He can still go even if he received the radiation since he received it an inpatient. So, that was good news. I am just waiting for them to call me back to after the insurance has cleared.  A nurse came to the house this afternoon which was very helpful. We are totally clueless in all of this. Just trying to make sure that my dad is comfortable. His temp was up a little, but she told us what to watch out for and get him to ER if those signs appear like chills, high temp, abd pain, etc. This is so scary.  I am still upset about the stent situation. I know this is very important. They gave him radiation yesterday this is all I know.  The doctor just said it is throughout the duct, didnt specifically say extraheptic or intraheptic. I was told by the radiologist that it had not spread when he gave us the info about the stages.

I go to school full time but I stayed home today and will be home tomorrow to help out. We have other family members coming up to help as well.

I appreciate your replies. Thanks for keeping me informed about this disease.

Janie 

Hi Janie,

I understand your mom being stressed, this is not a good time for her...all these issues are very confusing. It took me a year or so to fully understand the issues and believe me, more and more keep coming up.

Great news about the SK hospital. 

Don't be down on yourself for not understand the illness, most doctor's don't even know about this illness, that's why I told you to make sure the doctor that cares for you dad is a specialist in that field.

By the way, yes tell your mom to monitor his temp regularly. Do not let it get way out there to far before she does anything...100.5 with no chills take 2 tylenol...EVRY IMPORTANT...if your dad says he's getting chilled...ASAP to ER. This means the infection may have gotten into the blood stream and you don't want that to happen. Infection in the blood stream can be just as deadly as cancer...

Yes it is scary...and the reason is because we don't deal with it on a daily bases...just stay calm and do what they tell you. Just keep in mind, fevers will happen, when the bile is backing up into the liver it can cause an infection.

Yes I agree with you...the stent matter should be addressed and handled now not later. The doctor's comment that the cancer is throughout the duct..that's a pretty broad statement. I'm assuming he means the common bile duct...that's also a pretty long area.

Hey Janie, go to this site, it will help you understand more.

http://hopkins-gi.nts.jhu.edu 

I hope this works. If not Google The John Hopkins Medical Institute and get into their Digestive Disease Library  and then go to Gastroenterology & Hepatology resource center. This will give you a lot of info.

Also you can go to http://catalog.nucleusinc.com and look for bile duct cancer.

I see the radiologist told you it did not spread, that's good news. This means it may be limited to the common bile duct. 

I help this information was a little more helpful...remember stay calm, and don't get too hard on yourself for not knowing what to do.

Let me know what happens

Leonard

On 3/17/2009 Solutions wrote:

Hi Janie,

I understand your mom being stressed, this is not a good time for her...all these issues are very confusing. It took me a year or so to fully understand the issues and believe me, more and more keep coming up.

Great news about the SK hospital. 

Don't be down on yourself for not understand the illness, most doctor's don't even know about this illness, that's why I told you to make sure the doctor that cares for you dad is a specialist in that field.

By the way, yes tell your mom to monitor his temp regularly. Do not let it get way out there to far before she does anything...100.5 with no chills take 2 tylenol...EVRY IMPORTANT...if your dad says he's getting chilled...ASAP to ER. This means the infection may have gotten into the blood stream and you don't want that to happen. Infection in the blood stream can be just as deadly as cancer...

Yes it is scary...and the reason is because we don't deal with it on a daily bases...just stay calm and do what they tell you. Just keep in mind, fevers will happen, when the bile is backing up into the liver it can cause an infection.

Yes I agree with you...the stent matter should be addressed and handled now not later. The doctor's comment that the cancer is throughout the duct..that's a pretty broad statement. I'm assuming he means the common bile duct...that's also a pretty long area.

Hey Janie, go to this site, it will help you understand more.

http://hopkins-gi.nts.jhu.edu 

I hope this works. If not Google The John Hopkins Medical Institute and get into their Digestive Disease Library  and then go to Gastroenterology & Hepatology resource center. This will give you a lot of info.

Also you can go to http://catalog.nucleusinc.com and look for bile duct cancer.

I see the radiologist told you it did not spread, that's good news. This means it may be limited to the common bile duct. 

I help this information was a little more helpful...remember stay calm, and don't get too hard on yourself for not knowing what to do.

Let me know what happens

Leonard

 

 

 

Hi Leonard,

 It is so hard to watch my dad lay there looking lifeless or weak. He still has strength but I have to pull him up and then he can move around. Anyways, he got accepted to SLK. He has an appmt this week, but I have to get all his pathology reports and slides sent there for his consultation. I do not want to have to put it off until next week. I have been calling every where. His oncology doctor has been very cooperative and she will send what they need. I just have to get the slides that they requested from medical recs dept.

In ref to his stent, they are trying to put it inside. they have one outside. The person tht is doing has been able to locate the spot which sounds like inexperience or maybe not. I do not know. I spoke awhile with the oncologist. She said perhaps SLK will be able to help or not, but since they have advanced equipment, perhaps. She told me intraheptic. I have been taking his temp and it is now normal. I told him to make sure to tell us if he is having abd pain or chills because it important for us to know so that we take him to the ER. Sometimes, when things are bothering him, he will not tell anyone like he did previously.

Anyways, I am still being hopeful. My mom is not agressive in pressing the docs or asking questions or following through on things. Anyways, we are making it.

Thanks again for all the information.

Janie

I

Hi Janie,

I understand the pain you must be going through, but bases on our past conversations, it sounds like you need to be strong for the rest of the family, especially for your mom.

This cancer makes a person very week, he most likely doesn't want to eat...the bile backup does that.

Happy to hear about SLK...do everything possible to get hime there ASAP.

Janie, they want that so they can start reviewing the situation, but they will do all the test using their own system...they do not want to rely on test form others, but they need a base to start from. This same thing happen with Karen (my wife).

I'm glad to hear they have a drain tube outside...this will allow the bile to leave the liver area and not be backing up. I see you mentioned the person that is trying to put in the internal stent is having problems, I think you meant that...you wrote the opposit. Internal stents are very difficult and they do not last long, they get clogged and there is no way to unclog the stent other than removing it. My wife has three external drain tubes coming out of her body. On a daily bases I have to flush the tubes in order to keep the bile flowing into the small intestine. 

It sounds like you dad's oncologist has good bed side manners, she is being very polite, does not want to panic you...keep in mind you dad has a serious problem. 

Okay, I see your dad's Oncologist said intrahepatic, Janie, on the surface this is not so good. Not all but the majority of people with intrahepatic cholangiocarcinoma have large tumors and usually have evidence of regional lymph nodes and/or bone metastases at the time of the diagnosis. Janie, does you have any sign of jaundice...yellowing in the eyes or skin? 

Your dad really needs to be seen at SLK ASAP.

That good that he's not experiencing a fever and you're right, make sure he tell you if the feeling chilled...I also understand about the man thing...he bothered and also scared and sometime pissed off about what he's going through...he may not want to worry you guys...keep your eye's on him, you will know if he's having body chills. I had to call 911 at 1:00am one night when Karen could not even talk,scared the hell out of me and the kids.

Janie...always stay hopeful, never cry in front of you dad and as much as possible keep a smile on your face even if your sad...this is very important.

Janie...get you dad to SLK...the worst thing about this cancer, is that it comes on you fast...it's a very slow cancer...it may have started 15 years ago and now came to a head...that why it's so deadly, by the time you see it..it has progress to a point of danger.

Again I hope this helped...I am very sorry to hear about all this, as I said before...stay strong for your dad and your mom...

Also, be sure you take care Janie, you need to stay healthy through all this crap...your mom will look to you for support.

Take care my new friend,

Leonard

On 3/17/2009 Solutions wrote:

Hi Janie,

I understand the pain you must be going through, but bases on our past conversations, it sounds like you need to be strong for the rest of the family, especially for your mom.

This cancer makes a person very week, he most likely doesn't want to eat...the bile backup does that.

Happy to hear about SLK...do everything possible to get hime there ASAP.

Janie, they want that so they can start reviewing the situation, but they will do all the test using their own system...they do not want to rely on test form others, but they need a base to start from. This same thing happen with Karen (my wife).

I'm glad to hear they have a drain tube outside...this will allow the bile to leave the liver area and not be backing up. I see you mentioned the person that is trying to put in the internal stent is having problems, I think you meant that...you wrote the opposit. Internal stents are very difficult and they do not last long, they get clogged and there is no way to unclog the stent other than removing it. My wife has three external drain tubes coming out of her body. On a daily bases I have to flush the tubes in order to keep the bile flowing into the small intestine. 

It sounds like you dad's oncologist has good bed side manners, she is being very polite, does not want to panic you...keep in mind you dad has a serious problem. 

Okay, I see your dad's Oncologist said intrahepatic, Janie, on the surface this is not so good. Not all but the majority of people with intrahepatic cholangiocarcinoma have large tumors and usually have evidence of regional lymph nodes and/or bone metastases at the time of the diagnosis. Janie, does you have any sign of jaundice...yellowing in the eyes or skin? 

Your dad really needs to be seen at SLK ASAP.

That good that he's not experiencing a fever and you're right, make sure he tell you if the feeling chilled...I also understand about the man thing...he bothered and also scared and sometime pissed off about what he's going through...he may not want to worry you guys...keep your eye's on him, you will know if he's having body chills. I had to call 911 at 1:00am one night when Karen could not even talk,scared the hell out of me and the kids.

Janie...always stay hopeful, never cry in front of you dad and as much as possible keep a smile on your face even if your sad...this is very important.

Janie...get you dad to SLK...the worst thing about this cancer, is that it comes on you fast...it's a very slow cancer...it may have started 15 years ago and now came to a head...that why it's so deadly, by the time you see it..it has progress to a point of danger.

Again I hope this helped...I am very sorry to hear about all this, as I said before...stay strong for your dad and your mom...

Also, be sure you take care Janie, you need to stay healthy through all this crap...your mom will look to you for support.

Take care my new friend,

Leonard

 

 

   

 

Hi Leonard,

Your responses have been comforting. Thank you my friend. The oncologist did tell me that it has not metastized. It is located in the lining of the duct. So, it is not in the nodes yet. I just hope that the chemo and radiation will shrink the tumor so that more bile can flow through.

Yes, he doesnt have an appetite. It seemed like he ate more in the hospital, but probably not. He just faked it I guess. I am trying to keep him on the same eating schedule as the hospital, but he doesnt want anything. So, we gave him ensure this morning. We tried to give him soup this afternoon, but he tried to eat it but he said it didnt agree with him. It was low sodium for restricted diet. He didnt want to eat dinner, but we gave him another ensure. Also, had to give him the antibiotics for seven days CIPRO and Flagyl. We are hoping to get him a hospital type bed so that he has the handles and we can adjust it for him.

I guess the thing that worried me is that even when we take him to SLK, they only have oncologists and radiologists. I am not sure where the gastrologists will come from. I guess the will refer us to one or send us back to the same hospital Do you know anything about the SLK? Well, I guess and hope it will all be answered this week when we take him there.

Thanks again.

Janie