September 16, 2016 at 12:19 am #69347gregfMember
Thank you for your comments.The surprise is advances in treatment I hope. What are you surviving?
GregSeptember 15, 2016 at 6:00 pm #69346mvprattParticipant
Glad to hear your story as well. There is so many of us …… I am anxiously awaiting medical literature to be updated… I think we will be surprised to see the change. I too like to live in the moment and I think what if this is my last…………. It often makes me irresponsible… in others view but I know that I am creating and capturing moments in time with my family and friends that cannot be replaced.
Hang in there… Wish you too many more years one day at a time.
MichelleSeptember 15, 2016 at 5:57 pm #69348mvprattParticipant
Thanks for sharing… I love hearing the words 11 years and I cheated this disease. It gives me hope to keep moving. I think all of us have come up with different ways to keep the demon at bay but I want to say I agree with your suggestions and the very best one is to make sure we are sleeping well and to indulge in a new mattress ….. I too had a new mattress purchased when I came home from the hospital last year … unfortunately I couldn’t sleep well in this top notch one hell of a mattress because I sank to far in the tempurpedic part…. so I have slept on several different beds since then in my house… I have just purchased the ” new mattress” to get me back in my own room….. so with all of this run on sentence I am whole heartedly agree that a mattress is key to recovery
I hope you keep adding the years one year at a time!!!
MichelleSeptember 15, 2016 at 12:37 am #69354gregfMember
Hello all. I feel like I am a long term survivor being 2.5 years but 11 years for Pat really brings hope. My Oncologist tells me this stuff usually recurs before two years. He feels very good about my chances of avoiding a recurrence. My tumor was perihilar and was removed with no lymph node involvement and clear margins although one was only 1 mm. I did Chemo gem/cis and radiation with Xeloda. I hope this helps bring some hope.I know it is more than I expected. I am very grateful for this time and hope to have many more years. More money is not my focus anymore. I walked away from a family business to retire at age 59 because ever since I was told I had this very nasty cancer I feel like work is taking time away from what I should be doing. Spending time with my family and helping others. Learning to live in the moment and get the most out of whatever time I have. Not my will but Gods.
GregSeptember 13, 2016 at 8:05 pm #8018herculesModerator
I am just eight days before the eleventh anniversary of the discovery of my Hilar cc tumor in my left hepatic duct. Tears well up in my eyes as I type it, no one was so ever grateful for any blessing life could grace me with. I am doing well, a recent blood draw shows no elevated anything, just normal. I am here to say this disease can be beaten for longer than anyone told me it could. For all you people new and looking for hope, please know it is possible. I have needed no treatment or anything after my January of 06′ surgery. No stent, no further treatment other than watching for a sign of this awful cancer’s return. I have continued to try to help someone every day in some way, and I just hope someone reads this and realizes a beacon of hope does exist. I was out fishing on lake Erie today with my son (we didn’t catch anything as the wind turned against forcast direction ) I still had a banner day and even love a day fishing with no fish… how cancer changes the way you look at everything, so there it is, my story of long term survival with no repercussions, I hope more of us can write these emotional words, as it’s hard to share how I truly feel as I have somehow cheated this awful demon from taking another good life away. Early diagnosis and prompt treatment are key to beating this disease, if you are fortunate enough to have symptoms that lead to the discovery of the cancer early that is the first thing one needs. secondly to not have a re-occurrence . I lost eighty pounds from time of diagnosis to 3 months after surgery. I had an unusual tumor, which was likened to a small mushroom rather than like a wedding band on the inside of the duct as most cc hilar tumors are .from there they usually grow through and surround the bile duct wall, where it usually quickly grows around the portal vein, which is a direct link back to the liver. All of these things are a part of how it went so well, or differently. I have primary sclerosing cholangitis which they say increases the likelihood of a re-occurrence , yet I have remained cancer free. I use cannabis for appetite, pain management, and also because I like it. I eat healthy and remain as active as I am comfortable. Keeping weight under control is part of it, not to much or too little. Avoid tobacco smoke and polluted atmospheres, and don’t allow this condition to stress you out. Sleep is important, go out and buy yourself the nicest mattress you can and splurge on that 1 thing. I cook all my own meals and I have a dog that walks me every day. there it is, I am happy and humble and grateful, and god willing I will be around a bit longer, I hope more long term survival stories come soon, Pat
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