Thanks for posting for those of us just starting our journey you are an inspiration. I don’t seem to get much encouragement from medical community. I don’t even feel sick yet if I ask if I mightive until next summet silence. I am stage 3B. I just got enrolled in nucona trial and will be randomized Monday.
Have not posted in a long while and decided I needed to give back some of the great encouragement a fellow ICC fighter, who just recently lost her battle provided to me over the passed years. Thank you and God’s speed to you Patty!
I am now 7yrs, 6mos., Post diagnosis and resection surgery. Age 53 at initial diagnosis and was a fortuitous identification as the testing was totally unrelated to my unknown ICC.
Subsequently to my initial surgery, I underwent 4 VATS to remove ICC Mets in my lungs and 3 SBRT to address 3 other Mets in my lungs over the first 5 years after my initial diagnosis and resection. Over the past 2.5 years I have had no evidence of disease in either my liver or lungs. No chemo at all. No other treatments.
Over the past 4 years, Patty Corcoran and I kept track of each other as she was diagnosed a month prior to me and by my limited reading was the only long term survivor that I had found. Unfortunately, just a few weeks ago we lost Patty as she was no longer able to keep this dreaded monster at bay.
So why my reengagement after so long. Well, I really never left, just read more than commenting and now I am back to trying to understand what the future may be. There is very little that I have found out there of long term survivor stories or insights. I want to continue to be one of those and I want to know of others such that I can continue to look forward with even more confidence. Finally, I wanted to share, as Patty shared with me in the hopes of helping others and to increase the voice and volume of hope for long term conquering this demon!
This topic was modified 4 years ago by obrienfam5.