Y'all -
My husband was diagnosed with Stage IV-b ICC about a year ago and is in far better shape than we could have imagined, although he remains in pain from sciatica and possible radiation enteritis caused by 25 rounds of radiation. (We're still not sure it's enteritis. The pain is much lower than the place targeted by the radiation.) His surgery in February (at USC/Norris, performed by the livesaving Drs. Selby and Kulkarni, with ERCP assistance from Dr. Buxbaum) seems to have given him a new chance at life, for which we are profoundly grateful. When his surgery was finished, there was "no visible disease" left in his body. Great news! but that means it was still lurking around somewhere. So in addition to the radiation, he had 8 treatments of Gem/Cis in 2013 as well.

His radiation oncologist, USC/Norris' Dr. Ballas (who cannot have enough good things said about her) put him on a monthlong course of Dexamethasone to help with the intestinal pain. It's helped. But he's itchy and still in some pain, both in the lower bowel area and subscapular. (Oh, and the sciatica makes it difficult for him to walk from the garage to the loft we live in.) His brain is telling him it's the same pain as pre-diagnosis, which is scary. Since he had significant lymph node involvement in the area around the common bile duct, it is possible that there is a recurrence of disease in the mesentery. We'll know more after his next set of scans next week. Meanwhile, he's gained a ton of weight from the steroids (which may be causing the sciatica) and does not have normal bowel function. His last scans were in September, and they were clean. But this itching has me freaked. It doesn't seem to be a listed side effect, and because I know itching happens when the liver is compromised, I'm quite worried. Has anyone else ever experienced this?

My husband's first oncologist (who also pronounced him non-resectable with "a belly and chest full of disease," which --thank goodness!--was not the case) told us that because clinical trials were not supported by the available literature, that he did not recommend them to his patients. Of course, building a basis for future data-driven recommendations for patients seems to be the point, but at the time of the diagnosis we were too shocked to argue with the guy. Incidentally, he did not remain our oncologist for long.

In any case, our experience has been that the need to move forward with treatment options trumps the patience and persistence it takes to find and determine one's eligibility for a study. Additionally, it takes a cancer research team to figure out where the trials are being held and how you might fit into their protocols. Since my husband has been through two different kinds of chemo and a resection in the four months since his diagnosis, we find that he's no longer eligible for a number of trials that we've researched. I do not think that we would have been willing to allow the cancer to progress while we waited around to determine whether or not we fit the parameters of a trial. The day that Dr. Selby--an amazing, brilliant surgeon who sees possibilities where other physicians see boundaries--pronounced my husband resectable, he was ready to climb onto the table with whatever butterknife and bandaids were available.  At that point, no trial was worth waiting for. We saw a path that gave us hope, and we jumped on it.

3

(7 replies, posted in Introductions!)

Mark and Randi, you--and survivors like you--give me so much hope for the future! I just read that Doors keyboardist Ray Manzarek died of cholangiocarcinoma, and I'm reminded that this disease shows no mercy. My husband keeps telling me that when the odds are 99-to-1, he will ALWAYS be the one who beats the odds. I believe it! and I am so grateful to hear of the success of others who continue to fight and win. Tomorrow is another chemo day at the USC Infusion Center in Pasadena, and I keep thinking that with every drop of poison in his body comes a new chance for survival.

Again, thank you for being part of this community of people who understand and care. My world has become all-cancer-all-the-time, and it's sometimes difficult to explain that to people who are not experiencing the cancer rollercoaster. And as you all know, it's some ride.

4

(7 replies, posted in Introductions!)

My husband's life was saved as a result of information found on these boards, and for that I am profoundly grateful. Thank you, thank you!

My husband was diagnosed with nonresectable Stage IV intrahepatic cholangiocarcinoma, deep vein thrombosis, and pulmonary emboli in January. We were devastated. Worse, his oncologist at Cedars Sinai really only held out hope of palliative care and was adamant that my husband would never be a candidate for resection. He's only 52! How can this be possible? But one of my husband's close friends found this community and, based on the information shared by other patients, was able to make recommendations about other physicians and possible treatment plans. We needed someone who believed in beating this disease and was willing to stand by my husband in this fight--and mirabile dictu!--we found Dr. Selby at USC. After a 10 hour surgery, my husband's surgical team pronounced him "visibly cancer-free"--and three months and two chemo rounds later, the disease has not returned. A miracle! He's lost 40 pounds, is still on chemo and will likely move to radiation next, but right now, he's in great shape and his attitude is truly inspirational. The chemo (he's on gemzar/cisplatin) causes nausea and fatigue. "I don't get nausea and fatigue," he says. "I CAUSE nausea and fatigue." But despite the toll it's taking on his body, he even played a little bit of tennis today! 

I just wanted you to know of the difference you have all made in his recovery, and how much this information has helped us negotiate our fear of the unknown. Of course we don't know what the outcome will be--but we do know that he's much better today, and we are no longer talking about strictly palliative care. Now that he's been debulked we're looking at a very different playing field.

Thank you for helping us get to this point. Let's hope that in five years we can pronounce him cured!