Bile Duct Cancer

My husband (45 years old) has bile duct cancer it was discovered March 2007 after he turned jaundiced and was in pain. He was unable to have a re-section back in May '07 due to the cancer spreading to the lining of his body cavity - 4th stage. In June he started chemo - Gemzar and 5FU; 3 weeks on and 1 week off for 6 months. Right before he started chemo his Oncologist suspected he had an abcess, but his Liver doctor decided it was just air in his body cavity. For 4 months we dealt with chills (Riggers), fevers, sweats and mental confusion while he was on chemo. What was really odd was that he could be suffering from the above symptoms, but when we would take his temp - it would be normal. Finally, a group of infectious disease doctor got involved during one of his many trips to the hospital - this was in late September and confirmed the presents of an abcess. A drainage tube was placed in the infected area, he was on antibiotics IV & oral. Since then he has not had any of the symptoms. He also has a drain in his liver for the excess bile - which drains exterior. Hopefully, we'll be able to re-start his chemo soon. Right now he is in extreme pain and has a pain pump.

Do any of you feel like your doctors don't want to run additional test or research different treatment plans because the cancer is considered terminal?

I'm willing to speak with anyone that has questions or suggestions. We hope and pray for each of you and your families.

TnFishersWife

On 10/27/2007 TnFishersWife wrote:

My husband (45 years old) has bile duct cancer it was discovered March 2007 after he turned jaundiced and was in pain. He was unable to have a re-section back in May '07 due to the cancer spreading to the lining of his body cavity - 4th stage. In June he started chemo - Gemzar and 5FU; 3 weeks on and 1 week off for 6 months. Right before he started chemo his Oncologist suspected he had an abcess, but his Liver doctor decided it was just air in his body cavity. For 4 months we dealt with chills (Riggers), fevers, sweats and mental confusion while he was on chemo. What was really odd was that he could be suffering from the above symptoms, but when we would take his temp - it would be normal. Finally, a group of infectious disease doctor got involved during one of his many trips to the hospital - this was in late September and confirmed the presents of an abcess. A drainage tube was placed in the infected area, he was on antibiotics IV & oral. Since then he has not had any of the symptoms. He also has a drain in his liver for the excess bile - which drains exterior. Hopefully, we'll be able to re-start his chemo soon. Right now he is in extreme pain and has a pain pump.

Do any of you feel like your doctors don't want to run additional test or research different treatment plans because the cancer is considered terminal?

I'm willing to speak with anyone that has questions or suggestions. We hope and pray for each of you and your families.

TnFishersWife

 

WOW...45 is very young to be going through bile duct cancer.  Stage 4 is serious.  My wife was diagnosed with stage 2B, that was bad enough. She had surgery and is doing well with regard to the cancer. Her current problem is the complications that come with the Roux-en-Y- loop procedure.  Fevers and chills due to bile infections.

I am very sorry to hear about your husband...The only thing I would strongly suggest is to make everyday and every moment count...don't cry in front of him and try very hard to keep his sprits up...I know it's asking a lot, but do your best.

Take care yourself, your health is important during these difficult times.

Leonard 

hi my mum was diagnosed with bile duct cancer last month, at the beginning of september she noticed she was jaundice and itching to the extreme.she spent 4 weeks in hospital not knowing what it could be.we found the nursrs did not went to help,the doctors were very cold one doctor  rang us with the result of the biopsy,asked us to attend as soon as we could,when we got there we waited over 1 hour,to be told;- you have bile duct cancer stage 3,the doctor then went through what the cancer is about before saying we cannot operate but there is other treatment to help like chmotherapy.apart from that your mums a fit 62,i culd not belive what i was hearing,just after wipeing my tears away,the doctor then said im going have to move on as i ve got a clinic to run, unbeliveable,,, not im sory or  would you like a tissue or drink. im very very disapointed about my mums expirience in hospital. i could go on forever,my mum sbeen visiting her own doctor  for years befor this came to light, her doctor said she thinks my mum may have fibromyalga[a form of autheritic pain. attending the doctors back and fourth. and nothing was done to help my lovely mum who is the carer of my dad and shes just had grandchildren.so if anyone is reading this please get a 2nd 3rd or 4th opion.i ve lost all faith in the system now.my mum is still active nothing has affected her yet , thank god she is due to start chemo cistaplatin with5fu.has any one with stage3 had this? i would love to hear of anyone who has tried an effective treatment.

Dear Distraught,

If your Mother's cancer is only 3rd stage and has not spread. Please contact Dr. Gregory Gores at the Mayo Clinic in MN in USA. He does liver transplants for people with 3rd stage bile duct cancer. Go on the internet and look him up - you'll be able to email him too. My prayers go out to you and your family.

Good Luck

Tn Fisher's Wife

On 10/27/2007 TnFishersWife wrote:

My husband (45 years old) has bile duct cancer it was discovered March 2007 after he turned jaundiced and was in pain. He was unable to have a re-section back in May '07 due to the cancer spreading to the lining of his body cavity - 4th stage. In June he started chemo - Gemzar and 5FU; 3 weeks on and 1 week off for 6 months. Right before he started chemo his Oncologist suspected he had an abcess, but his Liver doctor decided it was just air in his body cavity. For 4 months we dealt with chills (Riggers), fevers, sweats and mental confusion while he was on chemo. What was really odd was that he could be suffering from the above symptoms, but when we would take his temp - it would be normal. Finally, a group of infectious disease doctor got involved during one of his many trips to the hospital - this was in late September and confirmed the presents of an abcess. A drainage tube was placed in the infected area, he was on antibiotics IV & oral. Since then he has not had any of the symptoms. He also has a drain in his liver for the excess bile - which drains exterior. Hopefully, we'll be able to re-start his chemo soon. Right now he is in extreme pain and has a pain pump.

Do any of you feel like your doctors don't want to run additional test or research different treatment plans because the cancer is considered terminal?

I'm willing to speak with anyone that has questions or suggestions. We hope and pray for each of you and your families.

TnFishersWife

 

Hi Fisher wife,

I was diagnosed with bile duct cancer and had surgery 2 years ago,

successfully removed, it came back and I have small tumors in my

left lobe, I did chemo for a while and it helped to shrink the tumors,

however the cheom was taking the quality of life away from me.

I have been doing alternative energy work, I am doing pretty well,

my cancer is stable.  If your interesting and you want to talk further

call me at

.  lots to discuss

take care

carol

Carol,

We would love to hear about alternative treatment methods. My husband recently was back in the hosipatl. We decided to go back to the local hospital where he was originally seen. The doctors there are honest and caring. We found out that the cancer has spread/grown and has choked off his stomach from the small intestines.His regular Oncologist has been telling us that the chemo was working, the tumor has shrunk and is unchanged - that was a big fat lie! The test we kept requesting, that the other doctors denied us, were some of the first test run by our local hospital doctors. Please reply back with information on the alternative program you are using. We know the time is near, but anything that would extend our time together and give him a better quality of life is worth a try.

Thank you

TnFishersWife

On 11/16/2007 TnFishersWife wrote:

Carol,

We would love to hear about alternative treatment methods. My husband recently was back in the hosipatl. We decided to go back to the local hospital where he was originally seen. The doctors there are honest and caring. We found out that the cancer has spread/grown and has choked off his stomach from the small intestines.His regular Oncologist has been telling us that the chemo was working, the tumor has shrunk and is unchanged - that was a big fat lie! The test we kept requesting, that the other doctors denied us, were some of the first test run by our local hospital doctors. Please reply back with information on the alternative program you are using. We know the time is near, but anything that would extend our time together and give him a better quality of life is worth a try.

Thank you

TnFishersWife

My husband's tumor had spread from the bile duct to the stomach and blocked off any exit for food. The Gastro Dr. said  "Now that we can fix."He sent in the surgeon who that very afternoon performed surgery to create a new stomach opening  and attached to the small intestine. Up to that point my husband had not been able to keep down any food or liquid. This was supposed to fix it. No more vomiting we were told.  Two days after leaving the hospital, I was awakened with him sitting on the edge of the bed vomiting his guts out.  We had an appt. with the surgeon the next day. I told him about the vomiting and his reply was "Well, you know people do vomit without it being cancer or  fatal, and he might have picked up a stomach virus." I was horrified at his no big deal attitude. I reminded him of his remarks that the problem was easily fixed. No response. Needless to say the vomiting continued day and night. And he died vomiting.  Prior to the surgery he was told without the surgery he would continue to vomit.  In retrospect he could have done without the surgery because nothing changed and the surgery hastened his death. I found his Dr's very blase. When he first started to lose his appetite and I mentioned this to the Dr. he said "Maybe its your cooking." Was he trying to be funny and lighthearted - it wasn't appreciated. We needed to know why and what we could do to to help. I have lost all trust in hospitals and Dr's.  I used to think medicine was a calling, it is. Its the money calling. Irene, Bob's wife. (Bob passed away May 7, 2008.)