My Story

TheDirtyColon

Hi everyone, this is my first post but I have been following you all for about a year now since my wonderful news that was laid upon my shoulders. I was diagnosed here in Korea, about a year ago, with the stage 4 wonder growth in my colon that was nice enough to share it with my liver, thank you Mr. Colon, I will miss the 9 inches of you they took back in January. RIP.

Now when I got diagnosed, at the ripe old age of 44, my Korean doctor said in his broken english, "Oh John John John....".. Not the most optimistic appraisal that I had ever received, especially since I just went in because of a horrific stomach ache that lasted 4 hours. Wow... He also stated "Well if you do nothing you have about 6 months, but if you do, about 2 years. That was 18 months ago.....

My lovely wife took me to the number one Colon cancer doctor in the Far East and he confirmed it "Sorry John, this is un-survivable, but we are going to start you on Oxipalatin (horrible stuff, especially in the winter), oral chemo and some other drug that I forget as I type".

Well after 18 months of fun in the sun, my cancer has shrunk so much that they are now talking about liver resection (I would love opinions of those who have received this) and stopping chemo. I thank Jesus and God for this wonderful healing, because without him I would be in a worse place...

So my advice to all is keep your chin up, I was lucky, my hair didn't fall out with treatment, but did some strange things to the eyebrows, well keep your chin up, laugh and realize that this is beatable, if that is a word, and keep your outlook bright. It hasn't been fun, but you have to make of it what you can.

God bless all of you that have this horrible disease...

John in Daegu, South Korea...

Annabelle41415

Welcome
Welcome to the group and so glad you decided to not be a lurker anymore. Sorry you have to be here though but as you probably already know, we are a great bunch of people who can just be here to help you at this part of your journey. Great news about the tumor shrinking and now possible surgery. Oxy was a nasty drug that left me with permanent neuroapathy but it has gotten better.

Kim

Doc_Hawk

Congrats and Welcome
Howdy John,

Congrats on kicking the cancers nasty little butt and welcome to a very nice group of people. I had faith in God and Jesus before my dx, and things that I've experienced in the last two years not only strengthened that faith but changed it to absolute knowledge that They are there and are concerned about all of us.

Keep up the good humor and you resolve to prove your docs wrong!

Doc/Ray

Brenda Bricco

Welcome and congrats on your
Welcome and congrats on your shrinkage!
My husband was given the grim dx just as you were. His tumors shrunk and he became eligible for liver resection (65%/ right lobe on Feb 22). It was a tough recovery because of how tired he was for the first couple months after but he is scanning clean now and has lots of energy. It is my faith in GOD that carried me through all of this and will contimue to see me through what ever the future holds for us. I wish you well and pray that GOD blesses you as HE has my husband.
Brenda

JayhawkDan

Your story = great story
Thanks for telling us what you've been through. They told me the average life expectancy (stage IV, mets to liver) was about 29 months and I've used about 5 of them, but I expect to prove them wrong, of course. To be truthful, I've been struggling lately and pretty damned depressed, and it's good to hear your story. I'm hoping to hear someday that surgery is an option for me, but for now I'll keep taking the chemo and hoping for the best.

barbebarb

JayhawkDan said:

Your story = great story
Thanks for telling us what you've been through. They told me the average life expectancy (stage IV, mets to liver) was about 29 months and I've used about 5 of them, but I expect to prove them wrong, of course. To be truthful, I've been struggling lately and pretty damned depressed, and it's good to hear your story. I'm hoping to hear someday that surgery is an option for me, but for now I'll keep taking the chemo and hoping for the best.

Humor
Dear John

I was diagnosed w/Stage IV in Sept., and have had 2 recent surgeries and am on Oxyalyp., Xeloda, which upset my system all day.

Your post w/it's humor made me smile and gives hope.

I had mets to the lungs and an "Oops we missed something in 08, you have a tumors on your liver too" and you have a 50/50 chance....
I high tailed out of my local hospital to a hospital that thinks more out of the box....
I do realize I am fortunate it was found due to some weird breathing when I would lay down to sleep-go figure...

I will always wonder if I was staged correctly the first resection but I'm in the game now and hoping with this miserable fear and treatment God will grant me periods of new normalcy and love.

Sending hope and continued success with possible surgery/healing....

I hate cancer-thats all I can say. I am trying to find resolve and hope once I return to work I can at least get a couple hours free to not think about it and all my other concerns.

Thank you all for allowing me to vent too! That's all we can do is hope for the best to keep this awful disease at bay!

tanstaafl

above and beyond
One step at a time, we can peel back the frightening odds that we are quoted.

My wife's treatment uses a 5FU prodrug called tegafur-uracil, manufactured in Taiwan (UFUR), Japan (UFT) and Korea (Tefudex), too. There are about a dozen studies that I found that used UFT or 5FU right before, during and/or after surgery - like even within several hours. Normally the surgeons don't do surgery this close to chemo, afraid of wound problems. But surgery with perioperative 5FU or UFT has been done many times, successfully with normal results, and less recurrence. So we did UFT perioperatively for my wife's second surgery, to remove a cluster of para aortic lymph nodes.

I would be interested to hear your Korean surgeons' reactions to UFT treatment within hours or days to any abdominal surgery ("US normal" = oh, no), and even more interested in their capability, for a liver resection with perioperative UFT. My wife continues to do well when most doctors expect bad things, thanks in part to perioperative UFT and cimetidine.

TheDirtyColon

JayhawkDan said:

Your story = great story
Thanks for telling us what you've been through. They told me the average life expectancy (stage IV, mets to liver) was about 29 months and I've used about 5 of them, but I expect to prove them wrong, of course. To be truthful, I've been struggling lately and pretty damned depressed, and it's good to hear your story. I'm hoping to hear someday that surgery is an option for me, but for now I'll keep taking the chemo and hoping for the best.

Jayhawk Dan
First of all I let it slide that you are a Jayhawk, umm... BOOMER.... But I know how you feel. There are several times, especially the first 4 months that I was just miserable. No sleep, drank myself to sleep when I could sleep, stressed, then sorry for myself. Now I just look at it like a stepping stone, just another thing to overcome. It's tough, but you can do it.

God bless you man...

TheDirtyColon

tanstaafl said:

above and beyond
One step at a time, we can peel back the frightening odds that we are quoted.

My wife's treatment uses a 5FU prodrug called tegafur-uracil, manufactured in Taiwan (UFUR), Japan (UFT) and Korea (Tefudex), too. There are about a dozen studies that I found that used UFT or 5FU right before, during and/or after surgery - like even within several hours. Normally the surgeons don't do surgery this close to chemo, afraid of wound problems. But surgery with perioperative 5FU or UFT has been done many times, successfully with normal results, and less recurrence. So we did UFT perioperatively for my wife's second surgery, to remove a cluster of para aortic lymph nodes.

I would be interested to hear your Korean surgeons' reactions to UFT treatment within hours or days to any abdominal surgery ("US normal" = oh, no), and even more interested in their capability, for a liver resection with perioperative UFT. My wife continues to do well when most doctors expect bad things, thanks in part to perioperative UFT and cimetidine.

I will definitely ask my surgeon when I go up to Seoul on the 27th of July. Asian doctors are not constrained by the laws and requlations that limit some things in the United States. I am not saying this is bad or good but they are willing to try more agressive therapies then I believe in the US.

I will let you know...

Heck when I started, I didn't even know that the liver grows back, within a month. Amazing thing our bodies, God's wonderful invention....

PhillieG

Not to Break the Flow
but it might be nice to throw the doctors a bone once in a while.
The Doctors ARE the ones doing the work even if some feel they are merely vehicles of something else...

It seems like 70% or more on here have heard the "less than six months to live" spiel,
Yet, probably all of those are still here 1,2,3,4,5+ years more. I guess it's much easier to err on that side of the coin.

There have been many advances in treatment* over the past 10 years that made the "6 months to live" speech pretty much outdated. I'm very glad John that you are in that group who are still here and doing well. I believe that going with the BEST Doctor you can greatly improves one's chances of survival with cancer and probably most diseases. Maybe they have a direct line???
I hope you continue to have success.
-phil

Just curious, was TCM presented as an option at all being that it's been practiced for 4000 years, mainly in that neighborhood.

*I'm not claiming there are new drugs, just pointing out that there are new ways of using the tools that are out there

steveandnat

hello and welcome
Glad the 6 month prediction was wrong. I also had that speech and RTK that was June 09. Now starting my 62nd treatment today. Cant get surgery because of the number of tumors. Pray you continue to do well. Jeff