1 (edited by lackney Mon, 24 Dec 2007 07:49:22)

Topic: Introducing Jeff

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...
http://schoolstudio.typepad.com/health_and_wellness

Re: Introducing Jeff

Hi Jeff,
Welcome. Sorry you had to find us, glad you are here. I am pondering the transplant debate as well. There is so much confusion with some doctors really pushing it and others telling me to stay clear, that I need my immune system.

I hope you have a nice relaxing Christmas.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Introducing Jeff

Kris:
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?

Re: Introducing Jeff

Hi Jeff, my husband Charlie, age 52 was also diagnosed in May of 07. Thought I would share what he's experienced with you...it may help or not.  Had 14 weeks of Gemzar chemo starting in June and given 6 months to live.  He was getting ready to have theraspheres done, but got a call from a surgeon that was willing to take out over half his liver.  This was done in 11/07.  He's doing well.  Getting ready to start small dose oral Xeloda and radiation soon.  We also explored transplant.  We found out pretty quickly that the general feeling was not to waste a good liver on a cc patient who will have recurrence anyway.  Of course, we weren't told that bluntly, but we knew what they were saying.  We had to keep searching like you're doing.  We hope to keep on top of it with the 3 month MRI's.  Keep going, stay positive.  Keep us updated.

Best wishes,
Carol

Re: Introducing Jeff

Kris

I have always been told there is no chance of having a transplant as a treatment for cc, same reason given as to Charlie.  Is it the doctors in Sweden who are pushing it?

Ron

Re: Introducing Jeff

Hi Jeff, Welcome to the site.  Will catch up with your blog after the holidays. To much to read in one setting, quite a busy guy.  I believe in the power of the mind and staying positive.  I try not to drink to much chemo, I hate hangovers.
Wish you a Happy Holiday Season!
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Introducing Jeff

Ron, it depends on how many tumors there are, where and how big they are, and whether any have metasticized outside the liver.  I was diagnosed with CC in June and transplanted in August after undergoing radiation and chemo.  I only had one tumor measuring 1 cm.  If there are mets outside the liver that weren't picked up by the CT or Pet scans prior to my transplant, I was told that they will grow and spread like wildfire now that I'm on immunosuppressants.  I am also at increased risk for other types of cancer (skin and colon, to name two) due to the anti-rejection drugs.  That's the major risk of having a transplant.  You can read about the Mayo tx protocol for CC here: http://www.mayoclinic.org/news2005-rst/3026.html

Gene (4 months out from tx, fingers crossed)

Re: Introducing Jeff

Gene

Many thanks for the info.  I learned more from your posting than from any talks with doctors.

Wishing you the very best of good fortune with your transplant.

All the best

Ron