iowagirl

Kris…..I was having a hard time finding anything (which is good…right?)….but wanted to look again tonight when I had more time. Not finding anything doesn’t mean it isn’t possible….but the liklihood goes down considerably. I know what you mean about if things are rare…..then they will happen to you. We have had the same problem. That’s why I never take comfort in hearing someone tell me that the side effects in the papers for drugs NEVER ALL happen to someone. Because…for me….it’s the opposite. Will get back to you later tonight.

I imagine Mark IS grumpy….and dang it…he has a right to be. Crap just continues to happen and you guys are due a break.

Julie T.

H Tze, It was good to hear from you again on the discussion boards and get an update about your wife’s treatment. I’m glad to hear that you have a new plan of attack to treat the cancer with chemo. Please keep us updated as to how your wife is doing.

Julie T.

Dennis, Welcome to the CC boards and thank you for sharing your story. I am also a patient….having had a successful resection a year ago (Feb 2014) for intrahepatic CC. It sure sounds like you took the bull by the horns and were proactive in procurring a surgeon with whom you were comfortable and treatment. I’m a little worse for the wear….having done adjuvant chemo after the resection, but I’m trying to get on with my life and enjoy the good times as they come.

Julie T.

I had the left lobe of my liver removed….laproscopically….total time in the OR was about 6-7 hours until I was back in my room. I had surgery on a Friday afternoon and was dismissed on Monday morning following surgery. THREE DAYS!!! No complications despite having diabetes and obesity and a previous heart attack 13 years ago. At about 3 weeks out, the disolvable stitches they used on the exterior incision , dissolved prematurely on a couple of the laproscopic holes and one longer, 4 inch incision. So, we had to clean and pack the incisions daily for about 3 months before that resolved. It wasn’t a big deal and the silver impregnanted packing materials we used kept infection away. The resulting scars are more pronounced than they would have been, but my stomach already looks like a tic tac toe puzzle from a previous appendectomy, myomectomy and cesearean. In the grand scheme of things….I don’t care…..I earned every last one of them. They’re my battle wounds. )))

I agree with Judy….every person’s surgery will be unique to them….and so will recovery. There are a lot of factors that are in play. The surgeon should be able to tell you approximately how long .

Julie T.

I missed this in the press, but my mother told me about it tonight on the phone. And…..it can potentially be used against all solid tumors….among the hardest to kill off. I loved reading that story….and it should give all of us hope….those in the beginning stages of treatment, those whose treatment has failed and those, like I am, who wait and wonder if the CC will return and then what. There’s hope on the horizon……Mayo did something similar with measles and melanoma just last year. This sounds like it could get pushed through for use sooner than expected. What a joyous day for everyone if it continues to work and it is released for general use.

Praying for continued success of this immuniotherapy.

Julie T

Liz…..Good for you for poking around the website and taking that “one more step” that led to the meeting with Dr. Kato. I think a lot of the time, we have been schooled not to question what a doctor says….and then…if you get THREE of them telling you it’s unresectable,…..it makes sense that it’s time to back off. But first, when it’s YOUR life…..always question what the doctor is telling you….good or bad…to fully understand….and then…..as Duke says, “it’s YOUR life and future……and it’s worth fighting for. I’ve seen people get 5 opinions….and it was the next doctor who said yes to surgery and did it. Hang in there……stick to your guns. I’ll be adding my prayers to others for April 9th.

Julie T.

Moose,

Yes, I had the pain around the incision and under the ribcage you mentioned following the removal of my left lobe. The nature of the surgery is that they’re working around the diaphram and ribcage and the manipulation of everything can cause pain in the lower rib cage area. I had transient pain around my main incision (Laproscopic surgery…but one incision was about 4 inches long) for a number of months after surgery. The oncologist said it was likely nerve issues caused by cutting the nerves and it would eventually settle down. It did. After my GP read the surgical report description , which is a very detailed description of each step of the surgery that they did, she said that she was amazed at what all they did while they were in there doing the surgery and it was no wonder that I hurt. Hang in there….it will get better.

Judym,

I am aware of the Mayo article you mentioned about the treatment of a blood cancer with the measles vaccine. I have not asked about it as an option for cholangiocarcinoma. At the time of my surgery, all “visible” signs (macroscopic ) of the cancer were gone and no microscopic signs of it were found in the surgical margin or the 6 lymph nodes they removed. So, there really was nothing to talk about. Until there is an trial for CC for use of a vaccine like the one mentioned, I doubt that it would be used in an adjuvant situation either, esp with negative nodes, margin, vascular and neural pathways. At my Nov visit to Mayo, I tried to bring up questions about recurrence and his reply was that if it does come back, there are things “we” can do. He knew I was worried (duh). At this last visit in March, I asked about some new meds that there were rumors were coming onto the market in the next 6-12 months. He did mention one, which I now can’t remember, but reported on at the time. But, I had indeed forgotten about the measles vaccine they tried on the blood cancer that worked so well. I will try to remember when I go back in July to ask him about that….if there are plans to do a trial with it for any other kinds of cancer. I do remember that story well though….and it was a big deal in the news at the time.