October 13, 2010 at 4:01 pm #42875marionsModerator
I believe that the university of Utah has an ongoing live transplant clinical trial. BBfranson’s husband underwent his tranplant there. She explains it well in her blog.
Best to all,
MarionOctober 13, 2010 at 2:58 pm #42874kimkSpectator
I’m so thrilled to hear of your progress. Yes, my husband also got CMV (even though his blood work showed he had the antibodies for it). He was on the right track, they sent us home to Seattle and boom! he felt sick again. But the Mayo got him on the right antiviral meds and he recovered quickly. Aren’t doctors amazing? John’s hepatic vein was damaged in radiation, but during the surgery they gave him a new one (from a cadaver). We recently reached out to his surgeon, who said just knowing that John was doing well was thanks enough. Good luck to you too Cathy. All the best.
I am not an expert, but I believe DIA stands for Digital Imaging Analysis and its a test used to detect cancers. FISH stands for Fluorescence in-situ Hybridization and it looks for mutations in chromosomes. I believe its the FISH test that is so cutting edge. One of these tests (I’m not sure which one) was developed at Mayo and requires a special machine. At the time, I recall John’s doc saying Mayo was one of the few hospitals to have such a machine. So much was going on then, that I didn’t ask more questions. I hope this helps. All the best to you.
KimOctober 13, 2010 at 2:29 pm #42873jathy1125Spectator
Hi Kim, I am also one year cancer free due to a liver transplant. Barnes-Jewish in St. Louis Mo. and the Mayo-Clinic are the only two hospitals to offer this clinical trial. I was there 3rd patient. Dr. Chapman saved my life twice. My hepatic artery burst a month after transplant due to radiation damage, and was given maybe 36 hours to find another liver, he never gave up and was transplanted a second time on July 5,2009.
It has been 15 months now and I am finally getting back to normal. I had a major set back when I got CMV (be very careful to not get this).Iwish that transplant was option for more, I was told 6-8 months with out one. I have finally written thank-you to both donor families. I owe two strangers my life, so please cc family be a donor you can help save a mom, wife, sister, and friend.
Good luck Kim and John. I look forward to reading about your expierence. CathyOctober 12, 2010 at 8:17 pm #42872betsySpectator
I’ve had many brushings done during tube changes but I’m not familiar with the FISH test and the DIA test. Could you please explain a little more?
BetsyOctober 12, 2010 at 4:50 pm #42871lainySpectator
Kim, you and John are truly a Miracle couple. How wonderful to become published and for CC it is a giant step. Hope nothing but the best keeps happening for you and please keep us posted on John and the book.October 12, 2010 at 4:11 pm #4154kimkSpectator
Two and half years ago, my husband, John, received a liver transplant from the Mayo Clinic. He had been diagnosed with cc the previous year, but the doctors said they “caught it early”, and were therefore able to go through the transplant protocol. His doctor, Dr. Gregory Gores, and surgeon, Dr. Julie Heimbach, saved his life. He is now cancer-free and living a strong, vigorous, normal life.
John had PSC and UC for twenty years. These factors most likely caused the cc, which first showed up as a Klatskin tumor, blocking the bile ducts. Luckily, the Mayo treated him with an ERCP, during which they did “brushings”, the FISH test and the DIA test. From these three tests, they found “suspicious cells”, and called it cholangiocarcinoma. He also got pancreatitis from this first procedure, which subsequently developed a staph infection and almost killed him.
After two months of IV antibiotics, they were able to start the cc transplant protocol — external beam radiation along with Xeloda and internal radiation. Meanwhile, the team started searching for a suitable live donor, since the wait for a deceased donor would give the cancer time to spread.
Up until the staging surgery (the day before the scheduled transplant), the doctors were never really sure the cancer had stayed inside the bile ducts. If it spread, he would no longer be a candidate for transplant. But, they determined it hadn’t spread, he received the transplant the next day, and the rest is history, as they say.
I have written a memoir about our experience, to be published sometime next year. Check out my blog http://www.kimkircher.com for more information.
I truly want to spread the message that with early detection, this cancer can be beaten. John has also participated in a study at Mayo to help determine the contributing factors to this disease.
As I understand it, transplantation is the only “cure” for this disease, as long as they know they “get it all out”. With transplantation, they completely remove not only the liver but all the bile ducts, and often part of the pancreas as well, in order to remove all the cancer cells.
Ask your doctor if you are a candidate for transplantation. Mayo Clinic was the first hospital to offer transplants for cancer patients, but I hear that other hospitals are following suit.
All the best to anyone battling this disease.
- The forum ‘Surgery, Resection & Transplant Treatment Options’ is closed to new topics and replies.