gregf
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Mary
At the conference this year the fellow from Cure Forward explained how the info on clinicaltrials.gov
was unreliable and then closed Cure Forward a month later. Ever Since I have been doing some
research for other options.Take good care
GregMvpratt
Thank you for your comments.The surprise is advances in treatment I hope. What are you surviving?Peace
GregHello 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.
Peace
GregI am very happy for you Randi and it is nice to hear from a long term survivor. My surgeon told me he had some patients that were 5 plus year survivors but I never had a chance to meet or communicate with them. My tumor was extra-hepatic hilar CC which I believe was stage 2 with no Lymph Node involvement but was present in the nerve. I followed with chemo and radiation. I will get my next scan the beginning of April (2 years post surgery) and hopefully will get good news. Thank You for sharing your good news and bringing hope.
Hi Sally
I’m sorry to hear your sister still has to battle this cancer. I appreciate you sharing the info as it does bring some hope. My best to your sister.
Take Care
GregThanks Jason that makes sense. My tumor was not in my liver but in my Bile Duct. Hopefully that is the extent of it. It still confuses me why I was told before my surgery on the bile duct and liver that “if a pre surgery CT scan shows it has spread to my lungs the surgery would be canceled as it would not be worthwhile”. I hope all is good with you
Take Care
GregJScott wrote:Hi Greg,I think the difference is whether or not you think of the surgery as “curative.” If you have CC localized in the liver, then surgery could be curative. If it has spread to other organs, then you still might do the surgery on the liver (and perhaps other locations as well), but you would not think of the surgery as curative. If the CC has spread to other organs, then any surgical procedure is unlikely to be able to remove all the CC cells from the body.
Jason
Hi Christine
I am sorry to hear you received negative news. Why can’t they do surgery to remove the spots? What other options were you offered other than the trial @ MSKCC? Sorry to bug you with questions when you are looking for answers, wish I could help. I will pray you find a treatment that brings hope and successful results.
I just noticed you live in Cincinnati. I have attended many cancer support meetings/presentations in Cincinnati the past year and have never met another CC patient.Greg
bgmat48 wrote:I had my first scan and blood work since my surgery and all is well. I must admit I was nervous the last few days. MD Anderson will do a scan every 3 months for 2 years and than one every 6 months for 3 years after that, I then will be considered a survivor. Fingers crossed! I am grateful that my oncologist and his team are taking such good care of me. I am thankful and thank God every day .Hi bgmat48 and congratulations. I have not spent much time here and am not familiar with situation. Would you mind sharing the circumstances surrounding your diagnosis and the what and when of your treatment?
I had surgery to remove my Hilar Tumor in April of 2014. I also had Chemo and Radiation treatments which concluded December 2014. My Oncologist moved my scans to every 6 months after just 2 scans at the 3 month interval.
Again great news on the scan
Take Care
Greg
