Well, I guess it's about time I wrap up this post with the final diagnosis information. In the middle of September, during my transplant evaluation for the Mayo Clinic protocol, we discovered what we had hoped we would not - metastasis. Everything was going SO WELL with the protocol and all of the physicians on that team believed I would be a good candidate for the potentially curative protocol, so we were absolutely devastated. After 3 MRCP's, 3 ERCP's, 2 Ultrasounds, a bone scan, an endoscopic ultrasound and a whole bunch of other misc. tests it all came down to a CT scan that showed the "lumps and bumps" in my peritoneal cavity. This was a shock since the radiologists believed the MRCP's would have been more accurate at detecting them and those showed up as clear. I had a laparoscopy done the next day to confirm the findings on the CT scan which revealed extensive peritoneal and ommentum mets. I spent a few more days at Mayo to recover from that procedure and then to have a final ERCP with a metallic stent placement (it is my understanding that these are permananet and need only to be dilated every 6 months or so). I was sent home to pursue a regimine of gemzar and oxaliplatin for pallative/life extending therapy.
I'm currently 7 weeks into chemo and I definately feel rotten while recovering from it and feel much better when I have an off week. I'm currently awaiting results of some tumor marker tests and at the end of November I'll probably have another scan to determine if we will continue chemo or not. It's a hard decision to go forward with the chemo and take away some quality of life if it doesn't give me back some quality and quantity.
Meanwhile, my wife had our 2nd child (a baby boy!) 4 weeks ago and we're trying to patch things together at home. I've gone on disability leave for SSDI and must wait 6 months before anything starts coming in from that. Thankfully, my wife can still work part time and bring in some income, but it is a big burden on her to work and also care for the entire family. This is just a crummy situation all the way around. Due to my prior illness (primary sclerosing cholangitis), I was never able to get life insurance, either - so I don't have much that I can leave for my family after I pass.
I guess I'm feeling a little bit blue today and wishing that there was a "way out" of this situation. I'd like nothing better than to grow old with my wife, to love her and provide for her, and help to raise our family. Instead, I'm sickly and at times am a burden. It's embarrassing to admit how I feel today because my Christian faith tells me to trust and obey - and to know that we will be provided for. Forgive me for my shortcomings today!
The point of this post was just to wrap up the thread and let anyone who was looking for info on the Mayo Protocol to know how things turned out for me. My case isn't typical - the majority of people who are admitted to the transplant protocol will be able to complete the protocol and for those who do there are excellent long term survivals. But, in the hope that the protocol offers, keep it in the back of your mind that it doesn't ALWAYS work out. This cancer is so difficult to find sometimes that it doesn't work out the way that everyone wants it to.
God bless all of you who are battling this disease. For those of you with mets (anyone with peritoneal/ommentum?), do you have anything you can share on prognosis? None of my physicians really seem to want to give me a timeframe.
Ulcerative Colitis 1990, Stage 0 colon cancer and subsequent colectomy with J-pouch in 7/2005, PSC 7/2005, Klatsin CCA 8/2009