Topic: Introduction and question
I've been reading this site since my husband's diagnosis in 8/06. We were in the Mayo transplant protocol until staging surgery revealed metastasis to a node in November. We've been trying to find our way ever since.
Chemo or no chemo, and dealing with the ominous threat of frequent cholangitis. Metal stents were placed at Johns Hopkins in December. We thought it would afford us more time between cholangitis attacks. I think Hopkins' motivation was to make us go away. Which we did, and we won't go back there. We will now go to U Penn for ercp proceedures.
We had one stent occlusion since the metal stents were placed and this was dealt with at Penn with a plastic insertion into the metal stent. The left stent is now unaccessable. My husband is trying to be active, he's working almost full time and we just returned from a trip to Paris. Fly fishing this spring is his greatest goal.
Some of his physicians are talking about percutaneous drainage as allowing him a more active life with less of a threat of these dangerous cholangitis attacks every month or so. I must admit, he's really not crazy about tubes permanently coming out of his body. The last cholangitis attack almost killed him so we are looking for any advice or experience with percutaneous drainage.
There is also differing opinions on remaining on antibiotics. Some say stay on them the rest of your life, others say you need to get off of these for fear of antibiotic resistance. I see both sides of the issue.
We are trying 5 FU on a weekly basis for the last 2 weeks.
Any advice, words of encouragement or prayer will be greatly appreciated. We are both 55 years old and looked forward to a great retirement and future full of many things until this disease upended our lives.