July 2, 2007 at 3:17 am #16052nancylMember
Thank you, Jeff, for sharing your experience. You say that you had your “external drain back in for another two weeks.” I take it then, that you didn’t have external drains the whole time you were healing like my husband has. He’s convinced that having the drains external makes it impossible to avoid infections, but he can’t convince the doctors to take them out. He is, by the way, a highly trained nurse and has been very careful keeping the drain sites clean and dry. He just came home from the hospital yesterday. This time he’s on Cipro and Zyvox for a month. The previous 2 times, they would only give him a week’s worth of antibiotic because they didn’t want to select out for resistant strains. I’m hoping that a month is time enough to heal so we can move on to the next step.
Perhaps I used the wrong terminology, but I thought “positive” margins meant, “+”, “yes,” there is cancer there, not positive in the sense that is “good” – certainly not clear. He had 2 lymph nodes test + for cancer, and 2 negative, but as far as I know, no other tumors. I am a librarian (was a medical librarian at one point) so I searched MEDLINE for information on Cyberknife. I saw the articles relating to brain tumors, but of course, nothing about this disease. We have a Cyberknife facility very near here and appreciate the confirmation that it’s the way to go. Thanks again for the encouragement.
NancyJuly 2, 2007 at 12:50 am #16051jeffgMember
Hi Nancy…. Your Husband has been through quite an ordeal. When I had my resection of liver and gallbladder I was told 6-8 weeks without complications. I returned home after 7 days without external drain. One week after being home I felt something wasn’t right and went to my local ER. I had developed staph under where my gall bladder was resected. A pouch of infection was about to burst. They under CT guidance drained it and then I spent another 9 days in isolation and had to have external drain back in for another two weeks. So taking in count infections it can certainly take longer to heal. It was 4 months before I was back to work full time. Thank God my employer let me do little projects at home and kept my pay check rolling. Cyber knife radiation is state of the art. I was going for it myself but was told my tumors were to large and to many treatments would be required and that it would be just to much exposure. I did have 3-D conformal IMRT instead and it seem to have faired pretty good with my liver mets. I am now having it agian for a tumor discovered on my spinal bone. Only 7 treatments so far and it feels like progress is being made. I measure my progress by the amount of pain meds I need to use. When those tumors start putting pressure on your spinal roots you will definitely know it from the flank and hip pain. Back to Cyber Knife; normally is reserveed for brain tumors or other tumors less than 2 CMs. That is what I was told.
Does your husband have other suspicious spots ? Or maybe are they going to try stopping some blood flow to certain areas? I guess I would be asking why cyberknife if he had clear margins. Chemo, I can tell you from experience that if it is going to work it will, regardless of size tumor although I’m sure we all prefer the sooner the better route. Just don’t want to rush it before the body is ready for it. As far as the repeated infections, maybe a highly trained nurse could show you again the procedures / and cautions to avoid infections although sometimes we know it is diffult not to get. Nancy, it’s a roller coaster dealing with this CC, but remaining vigilant and positive does and will make things a little easier. Definitely call in for support when you need a break. I’m sending a few prayers of support your way for you and your husband to share. Keep on trucking!
Jeff G.July 1, 2007 at 7:34 pm #549nancylMember
I’m new here. This is our story:
My husband was diagnosed with cholangiocarcinoma early April. He’s 58 and thought he might have a gall stone when he went to see his GP. At the time he was fairly healthy, and all things considered, still is. He had resection done on April 18 at Temple University Hospital. They removed his gall bladder, bile duct, and left lobe of the liver; he had positive margins. After the 12-hour surgery he spent less than 24 hours in ICU. While he was still in the hospital, they put in a drain off the newly exposed liver face. That drain and the external stent have cause repeated problems ever since. He was released April 30, but has been hospitalized 3 times since for infection.
Because he had positive margins, he needs adjunct therapy; both chemo and radiation have been recommended. He’s antsy to get started, but he’s got to heal from the resection before proceeding. I’ve been poring over this web site to see if anyone else had this experience, but there’s too much to wade through and search results are mostly irrelevant. So, I thought I’d register and ask. Just how long does it take to heal from liver resection? His doctor said 6-8 wks, but it’s been over 10.
Also, anyone have experience with Cyber knife radiation treatment? That’s what they’ve recommended for my husband.
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