Long term survivor with cc
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This diagnosis and understanding it more made me realize that it has probably been growing in the body for years before the official down on paper diagnosis. It’s tough as all patients differ. In our case treatment was not an option, as my mom is getting the same side effects as if she were receiving the standard treatment. So in our case that would have made her worse. Very tricky illness and at times hard to figure out. It’s as if you feel stuck at times.
Melinda,
Wow, you have a great story, one of the miracles that give the rest of us hope.
I hope you enjoy the book.
MollyMolly,
Being that I am a very HOPE FILLED Montanan, I love the reference to the book you are reading, I will be getting my copy today!
I will hit my eight year mark of stage IV Intrahepatic Cholangiocarcinoma on December 1st this year. I am so thankful for the clinical trial of Adoptive Cell Therapy with Dr. Rosenberg which has extended my life hopefully for many years to come!
Melinda
Wow! This is great. It sounds stupid, but I really do believe in the power of “hope”, and messages like this really raise the bar. Somehow hope fuels a refusal to give up, even when your brain knows the harsher realities. Hope tells you a race is won one step at a time.
My favorite book right now is “Blind Your Ponies”, by Stanley Gordon West. Its about the town of Willow Creek, MT, who’s high school basketball team hasn’t won a game in 5 YEARS, yet they play every game like there was a chance, even though they many be down 50pts with one minute to go, they played just as hard, like they actually had a chance to win. The author seeks to answer the question of “Why do they carry on in the face of utter and certain defeat?”
In the book, the author talks about true heroism as “refusing to quit when there was no chance to win” and “giving your all in the face of absolute defeat”.
It is a book of hope, and not giving up, because miracles do happen.
Determination is an amazing thing.
I went to the way back machine, and I found this old thread, and it hit a cord. I have been thinking a lot lately about long term survival and all it encompasses which is certainly tied to diet, exercise, and keeping healthy. It is confusing to try to understand what factors lead to re occurrence of cc, and I know there are more long term survivors than what post here. I believe many who get past this cancer may not want to even look back on details of this experience. I saw a post by a man claiming to be a 29 year survivor on one of the facebook groups and I know there are more. I think it is possible to live a long full life after cholangiocarcinoma just like people without cancer. Some will do it and it is critical for patients facing this to know even stage 3 patients can be long term survivors if you pour through the statistics, so there is cause to remain hopeful. The whole way cc is treated is evolving and I am hopeful the numbers will continue to improve. Just wanted to dig up this old topic and put it out there again, remain positive, Pat
Jeans post would be great in survivor section. I always look at that section and it stays at four. Not very comforting., although I love, love love the stories. Just saying
Hi Janet, a lot of people go way back when searching for some answers from other patients and Care Givers. When they find a post, no matter how long ago, that answers their questions it is wonderful that they found such a helpful post. They want to share with other members that they found a great post that still applies to today’s problems with CC. We do go back 10 years but because of the rarity of CC quite a few posts from ‘way back’ still apply today. I get notes from ‘new’ members that they read about my journey with Teddy even though it started 10 years ago. The ‘sharing’ on this site is what helps to make it the best site there is for CC.
Hi All,
Figured I’d throw in my two cents on this discussion (man, do I go through my pennies this way!)
I don’t expect to be a longterm survivor but I have already survived two “edcuated guess prognoses”. I think we can al reasonably have a bit of hope that so little is actually know about CC that so-called long-term survival is a possibility, statistically, for at least a few. One day they’ll figure out why.
My own case: tumor first seen iin March 2008. Failed effort at resection in Sept. 2008. Have declined chemo and radiation not possible given location of tumor. Tumor did not grow for about a year but it is now; there is also a second one within liver. I certainly don ‘t feel well and struggle with symptoms, but am not nearly as sick as I “ought” to be by now.
I just don’t think enough is known that no hope is possible. Now the emotional turmoil on the other hand — there is a whole other topic.
This is a wonderful post. I enjoyed reading everybody’s comments. My congratulations to all the long-term survivors! I’m a 6+ year survivor of CC. I hope to make 10 years someday, and more! Yes there is always hope … we should never give up hope!
Dale
I’m in the Seattle area, too.
I was diagnosed three years ago. Just saw my GI doc today and he says I’m doing “remarkably well”. So there is hope!
Thank you all for always reminding us that there are long-term survivors and there IS still hope. Never give up hope, or you will lose the fight.
Linda
I too am a long term survivor – thirteen years. My surgery was a choledocojejunostomy (sp?). We did not end up with clear margins. Had chemo and radiation afterwards and have been cancer free since. Have recently been dealing with issues of scar tissue in the ducts of the left lobe causing blockages leading to recurring sepsis. The docs are not quiite sure yet what to do with me. Also, I am a Seattle native and still live in Seattle. Perhaps there’s something in the water…
Though this is indeed an evil, scary disease, there is always cause for hope.
Grace and Peace to all,
bob
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