Bile Duct (Cholangiocarcinoma)

Hi my name is ailsa (17), my grandad, 74, was recently diagnosed with cholangiocarcinoma.
Hes undergoing chemo but keeps getting told he cant have it because of a temperature and infection. on friday just gone he was diagnosed as anemic and his ankles are swollen with water round them.After 3 pints of blood, The hospital also say that he has an infection but even after all the tests they cant tell were it is!!!!! they have now told us that they cant give him any more advanced antibiotic because there isnt one. If he cant get a more advanced antibiotic then he wont be able to have chemo and his health is going to go downhill more than it already is. I keep trying to search everywhere but its difficult as im no doctor. If anyone is out there who can recomend ANYTHING, i please urge you to contact me. Any people from USA know of anybody? it doesnt matter where your from or what it is, i need your help and advice if you can give it.
This is his last chance and I really cant let him down. Thank you.

Dear Ailsa,

Don't panic. If your Grandpa's current doctors aren't doing the job, find another doctor. Don't be shy about speaking up. If you don't, the doctors will walk all over him and you. Demand answers and a plan. The infection must be defeated before they will do anything else.

Also check the gallbladder cancer section. There are many good posts with a lot of information in this section and the gallbladder section. Cholangiocarcinoma is gallbladder cancer. What stage does he have? Stage I, II, or III might allow him to have surgery.

We are with you. Let us know what more we can do.

My husband, 41, has been battling cholangiocarcinoma for almost a year. He had surgery in October 2004. He has also had a mystery infection that they haven't been able to find. In his case antibiotics have kept it under control. What antibiotics has your Grandfather been on? Cipro or Gatoflaxin have kept it under control for my husband. He has also been on Vancomyocin when he has been in the hospital. You can do IV antibiotics at home too which might work better than oral. We have had to do this twice and it is really no big deal, especially with a port in. They did two white blood cell tagging tests to see if they could find the infection but couldn't. This might be worth trying for your Grandpa. There was another test they discussed doing but I don't know the name of it. Please talk to his doctors and get second opinions. Most insurance companies will allow consultations with other doctors. Even our current doctors recommended getting second opinions. You might try going to an Infectious Disease Specialist. Also, don't give up hope but don't put so much on you. You are young and this would be hard for anyone. You can only do your best to find help for him. It may not be possible to cure him so don't think it is your fault if you can't. Cancer is a horrible disease that affects so many people. Sometimes no matter how hard you fight you still can't beat it. We are still trying to find treatments that will work for my husband but I think we are running out of time. Chemo just doesn't seem to work well with this disease so even if your Grandad could do the chemo it might not help and he might feel worse. Take one day at a time and enjoy every day you do have. Hopefully the doctors will find something that can help him. Good luck!

Thanks for the advice, We found out thats its a water infection,so now they are treating it accordingly but my grandad is taking the strongest steroids after chemo (on a monday) an stops after thursday night. He then is really bad over the weekend till he gets his chemo on the monday. His symptoms are hes really tired most of the time an he gets a temperature and starts shaking. I think this might be the chemo but is there anything to help him get over the weekend and stop the temperature rising?
yours thankfully,
ailsa

My husband also gets the shakes, sometimes really badly, when his temperature goes up. He has been on antibiotics this whole time but still has a temperature spike about once every two weeks. We can usually get it down with Motrin but when we can't he ends up in the hospital. When the shakes get really bad, as they have a few times, we have to give him Demerol which is the only thing that seems to work. Also, we found that it is important to not cover him up too much when he gets the chills because that just makes his temperaturer go higher. A friend of ours who is a doctor said his temp might be going up because when he lays down too much the oxygen isn't getting into all parts of his lungs. I can't tell you the technical reasons but it seems to help my husband when he gets up and walks some while he has a fever. My husband has not been on chemo in about a month and he had a fever earlier this week so I don't think it is the chemo that is causing it for him. I hope your grandad will get through this rough patch and get better. This disease is like a big roller coaster ride and you just have to hope for more ups than downs. I wish you and your grandad all the best. Good luck.

Hello Ailsa,
I am sorry to hear about your Grandpa. My husband was diagnosed with cholangiocarcinoma in May 2005. It began with itching and jaundice, which led to be admitted in the E.R. soon after that, his world caved in. He had a stent put in the bile duct for drainage. He was admitted in the hospital 6 different times since then. He had a chemo embolization in July which 2 days later he was admitted with bilateral pulmonary embolisms and now is on Coumadin. He,too, has many bouts of fever, chills, tremors and sweating as a result. He has gone home with the "pick of the crop" antibiotics IV and has had 4 pic lines pulled every time this crops up. They could not find the origin of the "infection". He later had enough and enrolled in Hospice program. He then was able to function for 5 weeks. We were told the fever is due to the tumor. So every now and then the cancer shows its ugly head and he gets those episodes again. He is very weak at times and sleeps alot. His appetite has diminished and we just live "moment by moment' instead of day by day. We were told early in this diagnosis that chemo nor radiation is not an option. My best to you and your grandpa. With God, The Great Physician, all things are possible with lots of prayers.