Just Diagnosed With Klatskin Tumor

My mom was just diagnosed on Thursday (1-3-08) with inoperable Klatskin tumor and was given 4-6 months - the Dr. also stated that this type of cancer is usually bulletproof to chemo & radiation.  On Friday & again yesterday (1-4-08 & 1-8-08) she had 2 stents placed.  One in the lower and one in the upper section of the Y bile duct --- I am so new to this that I do not have any idea of all of the medical terms that I am hearing and reading about - I'm sorry.  The 2nd procedure was to allow dilation before insertion of the stent.  The Dr. did agree to refer for a 2nd opinion if she chooses.  She does - however, need to recover before travel.  She was admitted to the hospital tonight with 101.4 fever.  They had not admitted after the 2nd procedure but did after the first - I didn't understand that, but am not the surgeon.  We hope to get into the hands of a surgeon with experience in the Klatskin field and within the state of GA or FL if able.  If anyone knows of somewhere 1st hand please pass it along ---- I did sign her up for the Mayo Clinical Trials, but have not heard back yet.

 

On 1/9/2008 JamiefromGA wrote:

My mom was just diagnosed on Thursday (1-3-08) with inoperable Klatskin tumor and was given 4-6 months - the Dr. also stated that this type of cancer is usually bulletproof to chemo & radiation.  On Friday & again yesterday (1-4-08 & 1-8-08) she had 2 stents placed.  One in the lower and one in the upper section of the Y bile duct --- I am so new to this that I do not have any idea of all of the medical terms that I am hearing and reading about - I'm sorry.  The 2nd procedure was to allow dilation before insertion of the stent.  The Dr. did agree to refer for a 2nd opinion if she chooses.  She does - however, need to recover before travel.  She was admitted to the hospital tonight with 101.4 fever.  They had not admitted after the 2nd procedure but did after the first - I didn't understand that, but am not the surgeon.  We hope to get into the hands of a surgeon with experience in the Klatskin field and within the state of GA or FL if able.  If anyone knows of somewhere 1st hand please pass it along ---- I did sign her up for the Mayo Clinical Trials, but have not heard back yet.

Hello Jamie

If you lived on the West Coast I would strongly suggest UCSF Medical Center in San Francisco.  But due to your location, I would suggest contacting Doctor Jerome Canady, MD...I believe his telephone number is 724-483-3639. I think Dr. Canady is located in McKeesport PA.

Sorry to hear about your mothers situation...I would not waste any time...move ASAP. Klatskin Tumor is a  very serious situation. 

Good Luck...Leonard

 

 

On 1/10/2008 Solutions wrote:

 

On 1/9/2008 JamiefromGA wrote:

My mom was just diagnosed on Thursday (1-3-08) with inoperable Klatskin tumor and was given 4-6 months - the Dr. also stated that this type of cancer is usually bulletproof to chemo & radiation.  On Friday & again yesterday (1-4-08 & 1-8-08) she had 2 stents placed.  One in the lower and one in the upper section of the Y bile duct --- I am so new to this that I do not have any idea of all of the medical terms that I am hearing and reading about - I'm sorry.  The 2nd procedure was to allow dilation before insertion of the stent.  The Dr. did agree to refer for a 2nd opinion if she chooses.  She does - however, need to recover before travel.  She was admitted to the hospital tonight with 101.4 fever.  They had not admitted after the 2nd procedure but did after the first - I didn't understand that, but am not the surgeon.  We hope to get into the hands of a surgeon with experience in the Klatskin field and within the state of GA or FL if able.  If anyone knows of somewhere 1st hand please pass it along ---- I did sign her up for the Mayo Clinical Trials, but have not heard back yet.

Hello Jamie

If you lived on the West Coast I would strongly suggest UCSF Medical Center in San Francisco.  But due to your location, I would suggest contacting Doctor Jerome Canady, MD...I believe his telephone number is 724-483-3639. I think Dr. Canady is located in McKeesport PA.

Sorry to hear about your mothers situation...I would not waste any time...move ASAP. Klatskin Tumor is a  very serious situation. 

Good Luck...Leonard

Thank you for replying.  She has an infection and was admitted last night.  The Dr. ordered xrays of the stents today.  Provided her fever breaks tomorrow he plans to insert a tube into her liver for drainage.  I have no idea if it will be a temporary or permanent tube.  I will ask the Dr. when I speak to him tomorrow.  I guess we will get through this situation before taking on the next one.

 

Hi Jamie,

I know very well about infections my wife had a lot of them.  It happens when the bile does not flow from the liver through the hepatic ducts down the common bile duct and backups into the liver.  I sounds like the stents are glogged.  When that happens the fevers will surface and even worse body chills will start.

It's good your mom is in the hospital, they will give her IV antibiotics and that will control the infection and bring the body temp back to normal.  The plan to insert a tube is very good.  My wife has two tubes and they a a life savor. The reason for the catheter drain is to allow the bile to flow out of the body. You should check your mom's stool color...tell the doctor if her stools are a ash color...that not good. That means the bile is not get down into the bowels. Also her urine color is important, it sounds like it may be dark yellow...tell the doctor if that the fact.

With regard to permanent or temporary...my wife's tubes will be permanent.  This is not bad...in my wifes case the tubes are not just to drain bile out of the body.  She has the tubes changed every 2 months. I'll explain more later.  My wife had surgery in July of 2003...a very rough recovery, but now with the 2 tubes...no fevers and everything is going well.  I realize the are doing surgery on your mom, this maybe because of the staging issue. Has the doctor mentioned why no surgery...you may not want to hear why.

Really go for the second opinion...I understand Dr Canady has done this surgery many times. When my wife was told about the Klatskin Tumor by the doctors at John Muir Medical Center in Walnut Creek, CA they also told her they would not operate. We needed to go to UCSF Medical Center in San Francisco and only 2 surgeons out of 20 would consider surgery...it's a very serious issue.  At the time prior to surgery, they gave her 6 weeks that was in July 2003.

Please keep me updated...I have a lot of information for you. I guess the mai thing you should ask the doctor is...why no surgery. Make sure it's not because he or the other doctors just don't want to attempt such a risky surgery.

Take care...it going to get harder before it gets better.

Leonard - Alamo - California 

 

   

 

On 1/10/2008 Solutions wrote:

Hi Jamie,

I know very well about infections my wife had a lot of them.  It happens when the bile does not flow from the liver through the hepatic ducts down the common bile duct and backups into the liver.  I sounds like the stents are glogged.  When that happens the fevers will surface and even worse body chills will start.

It's good your mom is in the hospital, they will give her IV antibiotics and that will control the infection and bring the body temp back to normal.  The plan to insert a tube is very good.  My wife has two tubes and they a a life savor. The reason for the catheter drain is to allow the bile to flow out of the body. You should check your mom's stool color...tell the doctor if her stools are a ash color...that not good. That means the bile is not get down into the bowels. Also her urine color is important, it sounds like it may be dark yellow...tell the doctor if that the fact.

With regard to permanent or temporary...my wife's tubes will be permanent.  This is not bad...in my wifes case the tubes are not just to drain bile out of the body.  She has the tubes changed every 2 months. I'll explain more later.  My wife had surgery in July of 2003...a very rough recovery, but now with the 2 tubes...no fevers and everything is going well.  I realize the are doing surgery on your mom, this maybe because of the staging issue. Has the doctor mentioned why no surgery...you may not want to hear why.

Really go for the second opinion...I understand Dr Canady has done this surgery many times. When my wife was told about the Klatskin Tumor by the doctors at John Muir Medical Center in Walnut Creek, CA they also told her they would not operate. We needed to go to UCSF Medical Center in San Francisco and only 2 surgeons out of 20 would consider surgery...it's a very serious issue.  At the time prior to surgery, they gave her 6 weeks that was in July 2003.

Please keep me updated...I have a lot of information for you. I guess the mai thing you should ask the doctor is...why no surgery. Make sure it's not because he or the other doctors just don't want to attempt such a risky surgery.

Take care...it going to get harder before it gets better.

Leonard - Alamo - California 

 

   Thank you again for your response.  I am sorry to hear of your wife's situation but am hopeful to hear that she has surpassed the expectations!  That is a blessing!  I will keep posting as the time passes - Thank you!

Leonard,

Just wondering - what is the quality of life your wife has now?  And during the past year or two?  My mom is doing much better today - the IV antibiotics are working - her fever is gone!  The hemotologist/oncologist visited her today and offered gemcitabine chemotherapy for palliative treatment.  He also agreed that once she regains her strength she can visit Mayo in Jacksonville, FL     We have read of more success than we expected --- that is promising!  But we wonder about the quality...

I'm willing to read about anything you're willing to share...

Thank you!   Jamie in GA

 

On 1/11/2008 JamiefromGA wrote:

Leonard,

Just wondering - what is the quality of life your wife has now?  And during the past year or two?  My mom is doing much better today - the IV antibiotics are working - her fever is gone!  The hemotologist/oncologist visited her today and offered gemcitabine chemotherapy for palliative treatment.  He also agreed that once she regains her strength she can visit Mayo in Jacksonville, FL     We have read of more success than we expected --- that is promising!  But we wonder about the quality...

I'm willing to read about anything you're willing to share...

Thank you!   Jamie in GA

Hello Jamie,

Sorry for not responding sooner, I'v been out of town on a business trip and returned yesterday, Friday, 1/18/08.

My wife's quality of life has changed for the better ever since her IR doctor inserted the second bile drain catheter.  We still do flushing once each day, but ever since the second catheter, Karen is not experiencing any fevers at all and believe me that's a God sent in it self. No sign of cancer, but she still does a CT/PET scan every 120 days, that schedule will move out further as things keep looks good.

Happy to hear your mom's fever's are in control...IV antibiotics will respond to quickly.  The trip is to keep the fever's away...remember what I told you, any back up of bile into the liver will cause infection and fevers.

Also, great...Mayo is one of the top choices.  

Jamie...it's January 19th and your last message was dated January 11th. that's been a while...anything new you want to say or ask.

Hope everything is going well for you and your mom.

Leonard from Alamo, California

PS..Quality of Life...as I mentioned above, my wife's quality of life is better today than the past 4 years.  It all depends on how things are handled. A Klatskin Tumor is serious stuff, not impossible to handle...as I also mentioned surgery is very important...Chemo and Radiation will not satisfy the issue. Even after surgery, you can expect a 2 year recovery period to just start feeling some what normal.  Naturally you'll never be the same, eating and digesting food will always be a issue. There is much more I can pass on, but I think the first step is to get your mom to a first class hospital with experience in these cases and than challenge the recovery issues as they surface.

Sorry don't mean to ramble...good luck