(41 replies, posted in General Discussion)

I've got my own issues with how I've been handled, but at least throughout the process at UW-Health here in Madison, the docs have all admitted, after I've probed and probed them for answers (and checked their answers with their colleagues) that they simply don't know. I have successfully reached the edge of their knowledge with almost every meeting.

With that said, it is clear to me, after a liver resection, and two processes for obtaining a live donor liver transplantation (failed)  (UW and NW Memorial in Chicago) that I'm probably better off not taking chemo, not having that transplant anyway (immunosuppression = easy for cancer to grow uncontrollably), and focus on quality of life and getting the darn bile out of my body as quickly as possible.

We'll see what I think when (not if) the pains get worse, but for now, I think the hands off approach that I've experienced by proxy, has been the best for my quality of life.

First, a send you good thoughts, as others have done for me....

I've been there, from 'abnormal' cells, to 'low grade' dysplasia to 'slow biology' cancer cells, to 'in situ' cells. After all the run around on definitions there is one bottom line, the cells being brushed are not healthy and are turning cancerous. First in small clumps and later they spread and some doc finally gets up the nerve to tell you you have cancer. Some tell you yes, some say no, but really when it comes down to it, you've got cancer, just a early early phase of it. Sorry for the blunt response, but as I said I've been through all this over the past 2 years and have suffered psychologically each time I got different responses until I just got use to the fact they were all dancing around their definitions of cancer.

I'm there with you! Turning 48 in April and hope to live to see more birthdays. You've got a strong psychological disposition and I am in awe of that.

I did chemo/radiation last year in preparation for the Mayo Protocol and Resection (successful). It did not solve much since cancer remains and now has spread a bit to a lymph node. All this to set up my challenging question to you:

One sideways, bold question (these times call for bold thoughts, eh?): why let chemo ruin your quality of life? All the studies I've read (and sure you have) and two oncologists I've worked with all agree chemo doesn't really slow the progression of this particular cancer. Why not get off chemo and save yourself the agony caused in part by chemo and live your life in as high a state of quality as you can?

I apologize in advance if the question is a bit over the top given you suffering, but I thought it worth being raised at least.


(19 replies, posted in General Discussion)

I've got a biliary tube/external drain as well and have had similar experiences (although I had a resection before all the jaundice started happening so I'm of course a different case - we're all so special aren't we ; )). Its all mechanics of getting fluid through the little holes in the tube and out. In Jan, after my first replacement, I got no drainage and started itching. Feb tube change brought relief as the docs literally cut bigger holes and repositioned it and all was well (other than all the microscopic biliary ducts deep in the liver that all show strictures - and thus keep my bilirubin counts up around 10 from a high of 16. The stent (which goes from small intestine to external bag) can only get so much bile out. So stents are only so effective.

Have they discussed an internal metal stent? These things are wild. They slowly expand inside of you and create quite a reservoir for bile to flow. For the CC patient, they are more permanent (change every 6 months) and don't clog as easily. I wonder if that is an option you might explore with your docs?  (I'm lobbying my doc for it so I can swim this summer and sit in hot tubs again.)

I can say that in distinction from some other posts, we adapt psychologically, and having the bag and doing the monthly change outs is "no big deal". It is kind of weird how you can get used to something quite alien to most folks, but there it is. I think its a coping mechanism we have the just kicks in when needed.

I've been blogging for a time on the pros and cons of a variety of alternative/complementary strategies. I don't suspect I'll have uncovered anything that most of you haven't already, but I've at least blogged some of my thoughts regarding the whole issue of alternative vs complementary vs conventional at


(7 replies, posted in Introductions!)

I am in a deep search for an alternative to the transplant of course. I've got about a year to find it before my docs start to advocate more vigorously. If you can find, or if anyone can find examples of how the avert transplant and if not reverse but hold off the advancement of CC I'd of course love to hear of those options.

I've explored just about all the complementary/alternative approaches and follow many of them as most are obvious healthful steps we can all make, but moving into the area of a true alternative to the transplant would be preferred, eh?


(7 replies, posted in Introductions!)

I am glad to find this site. Good to finally know others with this rare condition. I was diagnosed in May of 07 at the young age of 45...(after battles with UC from 1985-2002, then PSC in 2004) did a resection and am now being monitored for a potential run at a liver transplant next year. In this last sentence is contained deep emotional upheaval as all of you are so familiar.

My main source of incredible support has come from my willingness to share on my wellness blog that I now share with all of you as well...