January 12, 2010 at 1:18 am #33832walkMember
I have been keeping up with Brian’sWife through their blog. From the notes others have posted, it appears Brian has passed. I didn’t want to post this in the remembrances section because I wanted to leave that for her.January 9, 2010 at 5:23 am #33831mlepp0416Participant
I’m new to this forum and just posted my husband’s (Tom) journey with CC. Tom’s bilirubin level is 24.7 and the only thing he has is a external drain, undergoing radiation to the tumor, can’t take chemo becuase the liver duct is blocked by the tumor. I’m going to ask the doc’s why they can’t use the bili lights that they use for babies…Just a thought, don’t know if they use them on adults but so far not one of his docs suggested it. Good ludk to your hubby, he will be in my thoughts and you also.
MargaretDecember 21, 2009 at 3:01 am #33830
Thanks everyone – I will definetly make an appointment with the surgeon in NC. Charlotte is only about an hour or so away from home. We are also looking into the Cancer Treatment Center of America. Anyone have an opinion on them?December 19, 2009 at 8:02 pm #33829marionsModerator
Brianwife….A biliary drain is a small flexible catheter (hollow tube) that is inserted “through the skin” and into the bile ducts to drain away their bile.
A biliary stent is an internal drainage tube placed “in the bile duct” to stop or to temporarily relieve an obstruction causing the blockage.
Does Brian feel a bit better today?
MarionDecember 19, 2009 at 2:23 pm #33828walkMember
I would like to echo Ashley’s comment about Dr Kennedy in Raleigh. My dad was not treated there, but I was very impressed with his nurse Mary England. They have their act together.
Also, let me recommend Dr David Iannitti at CMC in Charlotte. If you do a search of his last name, you should find an article that I linked earlier. He is a surgeon, but their practice is BCBS designated “rare and complex cancer” center.December 19, 2009 at 1:36 am #33827
he had 2 biliary drain installed and today they removed 1 that was causing him a lot of pain and discomfort. He also as PSC so some of the blockages are caused by that. Are the biliary drains the same thing as a stent?December 18, 2009 at 5:05 pm #33826rick-kampMember
What do the imaging studies say about blockage in the bile duct? If the stents are not resolving the blockage in the bile ducts then the bilirubin will not come down until there is good drainage. I would think that new stent placement, or even a surgical bypass of the blockage, would be a possibility – but they probably want to get the infection under control first.
Please keep us up to date. You will be in our prayers.
RickDecember 18, 2009 at 3:28 pm #33825ashleyParticipant
One more thing with the infection.. are you getting his blood results to track the white blood count?? I assume they are taking his count frequently. This will allow you to see if the infection is going away. Normal range is below 10.December 18, 2009 at 3:25 pm #33824ashleyParticipant
I read your update on Brian’s site yesterday and had been thinking of him since it had been a while since it was updated. I’m sorry to hear about his infection and high bilirubin.
Do they know where Brian’s infection is or what type? What happens when they grow the bacteria? Does he have a stent that is causing it? My mother was on Zosyn as well as an anti-fungal for infection ( diflucan maybe??). I ‘m not familiar with high bilirubin as my mother did not experience that but it would be a good question to ask to docs if the increase IS definitely related to the infection or not. Hopefully this is the case and then getting the infection under control will bring his bilirubin numbers down and allow him to get the chemo.
If you are looking for other alternatives – microspheres is available in Cary, NC by Dr. Kennedy. ( wake radiology). Unfortunatley I am guessing this may not be an option until the bilirubin comes down? It has proven successful on shrinking single tumors; however, I’m not sure of the impact if the cancer has already spread.
I’m hoping more members on this site can help you with the bilirubin questions. Sending good wishes.
Ashley from CTDecember 18, 2009 at 9:01 am #33823marionsModerator
Hello Brianswife….I am sorry to hear about your husband. I don’t have any answers regarding the bilirubin however, I do feel that the infection needs to be conquered before another treatment option can be considered. I am hoping for your husband to respond to the antibiotics within the next few days.
I am sending all my good wishes your way and please, stay in touch. Plenty of support will be coming your way.
MarionDecember 18, 2009 at 4:21 am #33822lainyParticipant
Some infections unfortunately take a little time to start clearing up. All depends on the type of infection. Do they have a name for it? I was under the impression that usually the patient/caregiver contact MD Anderson not the hospital, but I could be wrong. Did they just install the drains? I just searched Mayo Clinic Jacksonville on our search engine and all the remarks were good.
They must get the infection under control. Somewhere I think I heard that if the infection goes down so may the B.rubin. By morning I am hoping you get some more answers on our site and I am praying Brian’s infection and B.R. start traveling downward.December 18, 2009 at 3:18 am #33821
We were told that they contacted MD Anderson and that they said there was nothing they could do to help him. Today his bilirubin was 28.6. He has 2 biliary drains installed. They are treating the infection with iv antibiotics (Zosyn?). What else can be done to lower the bilirubin?December 18, 2009 at 2:51 am #33820lainyParticipant
Welcome Brian’s wife and sorry you had to find us. We do not accept “no treatment” as an answer! I would very quickly gather his reports and fax them to MD Anderson in Houston or at least get another opinion near you. What is his bilirubin count? Infections seem to go with the territory. Are they treating the infection? Are they doing anything. I am sure you will get some good advise from our Board. If you go to the top of the page and find the search button you can type in anything and get some answers, like bilirubin or infection. You need to arm yourself by reading as much as you can and in a short time. Then write down questions for the doctors. Unfortunately because CC is so rare a lot of the treatment is hunt and peck but we also have survivors on here who were told there was nothing more to be done. Ask the doctor if he is very experienced in handling CC? Like how many has he treated? Yes, yes, we don’t like the negative approach when we want to hear, “we can try”.December 18, 2009 at 1:23 am #3003
My husband was diagnosed with CC in Sept. 09. He is 30 years old. He has been treated at Mayo – Jacksonville since we found out. We went through 4 weeks of intense radiation. He cannot do chemotherapy because his bilirubin is too high. They are telling him that he’s not going to make it. What can we do? What’s working? How can we lower his bilirubin? He needs chemo! He is not eligible for a transplant because the cancer has already spread to his lymph nodes. Please help I am desperate! He is hospitalized now because of a bad infection.
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