gene
Forum Replies Created
-
Posts
-
Zed, I had PSC with all of the same risk factors for CC that you have. For ten years prior to my CC diagnosis, I just had annual LFTs done. When they spiked suddenly in 2007, I was given an ERCP and the brushings revealed the presence of CC. I would think you should be able to convince your doctors to order bloodwork to be done more frequently than once a year to at least measure liver functionality if not directly for CC. If your LFTs were to spike like mine did, they could perform more specific tests to determine why and presumably be able to catch any CC activity early on. Best wishes.
I cannot imagine there being any legal implications just from having this discussion here. If there were, then PBS should have gotten into trouble for broadcasting “The Suicide Tourist” on an episode of Frontline.
http://www.pbs.org/wgbh/pages/frontline/suicidetourist/
Kim’s husband’s story was told in the Tacoma News-Tribune prior to his transplant in 2008:
http://www.thenewstribune.com/154/story/280156.html
daleymom wrote:I guess I am just looking for anyone who has had the transplant and I am wondering how long they had to wait.I had one in August of 2007 after a wait of only two months. As Kris noted, Scott Franson had one last May after waiting about a year. He had his at the University of Utah, where I see you are from. Scott’s wife’s blog recounting their experience is here: http://bbfranson.blogspot.com/
Frogspawn wrote:The authors of this letter seem to suggest that invasive diagnostic techniques reduce the chances of success when the liver is resected. I would imagine that this is for the same reasons that Kris has mentioned….Actually, I think the letter in the BMJ is more about “tumor seeding” caused by biopsies, which is a different issue than what Kris addressed. Prior to my transplant, my radiation oncologist and the surgeon battled over whether I should have brachytherapy due to the risk of tumor seeding from the procedure. As you note, this is apparently a contentious issue in cancer treatment. For me, it was unsettling that my doctors were so diametrically opposed on what was the “right” course of treatment for me, but everything turned out okay.
Just wanted to let everyone know that there was an article in the Tacoma News Tribune today saying that Kim’s husband received a liver transplant at the Mayo Clinic last week and that he’s doing well and has already been discharged from the hospital. Congratulations and best wishes, John!
http://blogs.thenewstribune.com/adventure/2008/05/30/kircher_released_from_mayo_clinic_after_
heatherkp wrote:Lee wanted me to ask if anyone has or had ulcerative colitis before they were diagnosed with ccI do, and if you search the archives for “colitis” you’ll see lots of other people who do, too. A main risk factor for CCa is primary sclerosing cholangitis (PSC), and the majority of people with PSC have underlying ulcerative colitis (UC) or Crohn’s disease. I was diagnosed with UC in 1985, PSC in 1997, and CCa in 2007. Textbook case.
Gene
marions wrote:Dear bobojie,
As far as I know, at this time, the Mayo Clinic is the only place in the US who will perform liver transplants on CC patients if those patients meet specific criteria.I was transplanted in August at University of Colorado Hospital, and I know of someone else with CC who is currently waiting to be transplanted at the Univ. of Utah. The University of Chicago also does transplants for CC. All of these programs follow the Mayo protocol initiated in 1993 (small tumors only, no metastases, chemoirradiation, brachytherapy, then transplant). With Mayo’s 5-year 82% survival rate, I don’t see how the original poster’s insuror could defend its position not to cover orthotopic transplantation for her husband because it isn’t “standard,” or how UCDMC could decline to follow Mayo’s program because it isn’t “effective.” Hopefully, UCDMC will change its position when they meet with the TP surgeon later this month.
Kim
I read the article about John in the Seattle Times last month and got a distinct feeling of “deja vu” from it. I’m 49, too, have had PSC for years, and had friends and family members being evaluated as possible living donors for me last summer when a deceased donor liver became available in August. I got the call at 2:00 a.m. and was told I had to get from Aspen (where I live) to Denver by six a.m. in order to receive the liver. I made it with 15 minutes to spare. I’m now four months’ out from tx surgery and feeling great. I sincerely hope that John gets his soon, too.
BTW, the ski conditions in Colorado are phenomenal so far this season. I haven’t gotten clearance to go downhill yet (probably will in January), but I have done some cross country skiing and it’s been wonderful. While getting chemo and radiation in July, I thought I might never get an opportunity to ski again. Keep the faith, Kim, and my best wishes to John.
Gene
Ron, it depends on how many tumors there are, where and how big they are, and whether any have metasticized outside the liver. I was diagnosed with CC in June and transplanted in August after undergoing radiation and chemo. I only had one tumor measuring 1 cm. If there are mets outside the liver that weren’t picked up by the CT or Pet scans prior to my transplant, I was told that they will grow and spread like wildfire now that I’m on immunosuppressants. I am also at increased risk for other types of cancer (skin and colon, to name two) due to the anti-rejection drugs. That’s the major risk of having a transplant. You can read about the Mayo tx protocol for CC here: http://www.mayoclinic.org/news2005-rst/3026.html
Gene (4 months out from tx, fingers crossed)
