One patient with glioblastoma still alive nine years later
by karinbehr on Tue Nov 22, 2011 08:36 PM
my husband was diagnosed in Sept 2010 with bile duct cancer.A stent was put in. He was on chemo and radiation treatment for a year. October 2011 the old stent was removed and a new one was put in. another stent was also put in from the right side. The oncology dr said that he must rest for 3 weeks before carry on with the chemo. The cancer is not operatable. my husband is not looking good . He is very tired and is getting chills.
by Solutions on Wed Nov 23, 2011 07:44 PM
Just a very qiuck response regarding the chills.
Get your husband into ER ASAP. The chills indicate a fever and worst it also indicates infection. Most likely caused from bile backup into the liver.
Leonard from Alamo California
PS...this message is most likely late. I am sure he is being treated with IV antibiotics already...if not he should be.
by karinbehr on Thu Nov 24, 2011 07:46 PM
My husband is in hospital and on antibiotics, He was diagnosed in Sept 2010. He had chemo for 10 months and 2 months ago radiation. The stent that the dr put in 2010 was replaced and additional one was inserted +- month ago. For the last month he is feeling weak and then the fever and chills starts He is also complaining of back pain.
He was supposed to start chemo again. Gemzar and oxiplatin. The dr is saying that he must first treat the infection.
What do you think of natural medicines?
by Solutions on Thu Nov 24, 2011 11:55 PM
First of all I am pleased to hear your husband is in the hospital getting IV antibiotics...this is what he needs to control the fever and infection.
I understand the stent replacement issue. Karen had three stents with external drain tubes.
I don't know what your husband has....internal stents only or internal stents with external drain tubes and collection bags.
I go for the stents with the external drain tubes. I will tell you why later.
You must be very aware of keeping the him free of fevers. I know you have no control over that. What I mean is keep watch and when the fever gets to 100.5....immediately give him 2 Tylenols. This will help control the fever. It will not control the infection. Get him to the ER so they can connect IV antibiotic.
I know the chemo drug you are talking about...it's good. But if the cancer is spreading...beware of any chemo.
Do not let the doctor's tell you chemo will handle the non primary cancer...in my experience bile duct cancer that starts to spread will not react to chemo drugs.
The back pain is not a good sign. Sometimes this cancer will attach it self to the spine. Believe me I know this fact.
They can tell by viewing the CTscan images.
Your doctor is right with regard to not doing chemo while an infection is still there.
Karin, I know you and your husband want to do anything that will help. Natural Medicines...well let me put it this way. You are dealing with a horrible killer...you fight this horrible fire with super fire...I my opinion if natural med's are for the dreamers. I apologoze for being blunt. This is not a common cold the is bile duct cancer.
When he's out of the hospital...care for him....that is important. Ask about stents with external drains connected to a collection bag.
You will need to learn how to flush the inner stent to keep them from clogging. It is not difficult...I did it for 7 years. If they don't help you and teach you I will.
Again, it is good he is in the hospital and being treated for the infection.
By the way...what hospital is your husband being treated.
Bile Duct Cancer is rare...large medical centers are the best.
Small town hospital doctors do not have a clue of what to do.
Take care...and please keep my updated
Leonard (Solutions) from Alamo California
by karinbehr on Fri Nov 25, 2011 04:20 AM
At last, so nice to speak to someone, knowing the situation. Thanks also for giving your opinion about the natural medicines.
My husband have internal stents, i will ask the dr about the stents with the external drain tubes. We are staying in South Africa, (Port Elizabeth). Yes, I don't think they understand this type of cancer and the communication ......We were send from Cape Town, large medical centre in SA, after they put the stents in back home, just saying he must get chemo for another 4 months. Then a scan again...what is going to happen to my husband if they still dont want to operate?
My hubby's tummy looked swollen last night. Can that be from all the fluids?
by Solutions on Fri Nov 25, 2011 06:15 AM
It is 10:00pm PST in Alamo California.
The internal stents are not the best. They get clogged all the time. When they get clogged, bile instead of flowing down into the small intestines the bile will backup into the liver and cause an infection, fever and chills.
Keep in mind a bile infection in more deadly than the cancer itself. If the infection get into the blood stream it may be deadly.
The problem your husband has is that they did not do surgery. External stents with an external drain tube and a collection bag are only done after surgery.
Karin, understand something...this cancer tumor can only be handled with surgery. Chemo will not help the cancer. Chemo after surgery is okay and maybe some radiation.
But surgery is the only option to deal with with cancer.
You say they do not want to operate
Why do they say surgery is not an option.
It may be where the cancer tumor is located. It would help me if i knew where the tumor was located.
Did they say intrahepatic bile duct cancer or did they say extrahepatic bile duct cancer. One is in the liver and the other is outside the liver in the "Y" of the common bile duct.
The location of the cancer tumor is very important.
Karin, this cancer is very serious. If not handled correctly life is short.
You have to know your husbands life will end with this cancer. But you want to do everything possible to keep him with you as long as possible.
If they do not know how to handle the matter, are able to come to the USA and get treatment?
With regard to the swollen stomach...not a go sign. No I do not believe it is fluid build up.
When was the last time your husband had a bowel movement.
What color were his stools...brown...light brown...or ash color.
Is your husband skin or eyes turning yellow.
In closing...Karin...you must demand surgery or make them tell you why they can not do surgery.
Please keep me updated
Leonard from Alamo, California
It is 10:10pm PST her in California
by karinbehr on Fri Nov 25, 2011 07:00 AM
According to the prof in Cape Town, Andre got Hilar cholangiocarcinoma. What i understand , it is in the "y" of the common bile duct. He is also concern about a gland outside the bile duct. my husband skin and eyes are yellow at the moment.
I spoke to my hubby just now. The dr is keeping him in hospital, until they finish with the antibiotics. It looks like they are going to do a scan on Monday .
His fever is also back to normal again.
Thanks for speaking so openly to me.
it is now 09:00am here
by Solutions on Fri Nov 25, 2011 05:10 PM
What you are telling me is what I thought.
This is also called a Klatskin Tumor...or an extrahepatic bile duct cancer.
This is the same cancer my wife Karen was diagnosed with back in 2003...I am very familiar with Andre's situation.
The doctor's did surgery at UCSF Medical Center in San Francisco, California. Karen battled this cancer from 2003 the December 2, 2010.
You say a gland outside the bile duct is concerning the doctor. Are you sure the doctor doesn't mean the hepatic artery in involved.
My wife cancer tumor wrapped itself around her hepatic artery. The hepatic artery is one of two blood supplies to the liver. The other is the portal vein.
Andre's skin and eyes are yellow because of bile backup into the liver. The bile is not flowing through the stents into the small intestine...this needs to be handled ASAP.
The stents may be clogged. Do not take him out of the hospital with that situation...he will only return with another fever and chills...this can be deadly to him.
The antibiotics will clear up the current infection, but if Andre's stents are clogged he will experience more fevers and infections. That bile must be allowed to flow out of the liver either into the smal intestine or into a drain tube and collection outside the body.
That's good about the scan, they should know what is going by now...the CTscan will help.
Andre needs surgery now. Chemo and radiation will not help this Klatskin Tumor issue.
His fever is back to normal because of the medications. As soon as stop the IV antibiotics Andre will experience more fevers...maybe not immediately but very soon afterwards.
Please tell me why they do not want to do surgery. There are very few doctor's that can and will do this very complex surgery. They are concerned about their parient dieing on the operating table...this is a fact.
A very good liver transplant surgeon can deal with with complex surgery.
Please keep me updated.
Your friend Leonard
by karinbehr on Sat Nov 26, 2011 04:24 AM
This is how I understands it , if the tumor was just on one side of the liver, the drs could have removed it, unfortunately Andre's one is in die middle of the 2 lobes. That is why they gave the chemo and radiation to see if it does'nt want to shrink.
I am also concerned about the operation. What if Andre does'nt make it. At least he is still allive now.
Do you think we must try to get a second opinion? I know that our surgeon is one of the best in SA.
Ai Leonard, I just want the best for my hubby.
by Solutions on Sat Nov 26, 2011 06:09 AM
This is not an easy situation.
You said the tumor was in the "Y" of the common bile duct.
That is not in the liver. That is outside the liver.
if it was in the liver it woud be called intrahepatic bile duct cancer.
You told me it was in the "Y"
Something is not right here.
Chemo and radiation is worthless with this cancer.
Surgery is the only thing that will save Andre.
You may think you have the best doctor, But what I am hearing is that you have a doctor that wants to do the best for Andre but may not know how to do it.
Yes the surgery is a risk...but without surgery Andre will not do good.
I don't know what I can say now to help.
Other than stay with you husband. Tell him how much you love him. Do not leave his side.
In my opinion Andre is not as bad as the doctors are saying. He is not being cared for with experience doctors.
Karen, my wife was 100 times in more in trouble than Andre and she went on for 7 years plus.
I am sorry to hear what is happening
Take care...I sincerely hope everything works out for both of you.
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