falkol2002
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Thanks. Here is the thing. This tumor has thus far remained contained. The rest of the liver is very healthy. There is no further spread anywhere. I have absolutely no symptoms of any kind. My bilirubin levels are normal. My apptetite remains too good. Now mind you, I am not complaining. The surgeon assured me that the tumor is very operable. But…..”standard of care” is once there is spread to lymph nodes….yada yada yada. So……I am pushing for surgery. He said that if the next set of scans shows response to the chemo, he WILL do the surgery. I pulled a case report that was reported in 1993. Same scenario as mine……had the re-section even thought there was lymph node involvement…….he is still around. he had chemo along with surgery. So…….the bottom line is this…..you have to get very agressive and do what you feel is right in your gut.
I am NOT going to die from this. Not yet.
Thanks for all of the tips and suggestions. I have an operable tumor and I am going with that. Screw the lymph nodes.
Hi,
I am starting this regimen this week. The neuropathy stories are beginning to scare me. I am a nurse practitioner and I work in an Endocrine practice. I treat diabetes day after day. Many of my patients have neuropathy as a complication. I am interested in knowing what has worked for anyone. Also….I am a huge knitter. I find it very relaxing and am worried that I will not be able to knit once I start this regimen.
LillianI have United Healthcare and they are flat out saying no. They want to see phase 3 clinical trials to show support for efficacy. The oncologist wrote a letter, but they say they are working on it and will let us know in 4-6 weeks. Meanwhile they have approved the Xeloda. I will see the oncologist this week. My story is long, but in a nut shell, I have not responded to the Gemzar. While there is no visible spread, the tumor has grown. The surgeon is willing to go back in and take the tumor out, but only if there is response to chemotherapy.
I was diagnosed in Oct, 08. When they went to do the liver re-section, they found 3 lymph nodes. So they aborted the operation. I have been on Gemzar for 3 months. The scans come back showing no further spread, but the tumor is not responding. They now want to add Xeloda and Oxilaplatin as well. However, my insurance willl not cover the Oxilaplatin. “No evidence showing that it works”. I have United Healthcare. They want to see phase 3 clinical trials and there are none for cc.
I also just saw the surgeon again today. He is willing to go back in and resect the liver, but only if there is response to the chemo.
I feel very lost and scared. I have read the great results from the Mayo clinic trials. Not sure if I qualify with the lymph node issue. Other than that I feel great. I do not have any symptoms. The tumor remains contained in the left lobe at this point. The surgeon seems positive that if I respond to the chemo, I should do well.
I live in Connecticut, but will do anything or go anywhere to get help. Do you think I should contact Mayo?
Wow…you folks are great. Thanks for all of the information. Well….my numbers were great and I had chemo today. Dr. Levy said that he was contemplating contacting the surgeon to re-consider removing the lesion. That was good, because that was one of my questions to him anyway. I will have the scan in 4 weeks. Depending on that, will depend on the surgery. If Dr. Salem (the surgeon) does not want to do the surgery then I will find someone who will. Dr. Levy knows that I am determined!!! I still feel great and Dr. Levy said that he is extremely hopeful that I have responded to the chemo based on my bloodwork. Also…we talked about radiation. Cyber knife is something that is available here so that is an option. Thank you, thank you all for your words of wisdom and encouragement.
Best wishes to everyone.
LillianThanks for the words of encouragement. The worst thing about this is that I am getting chemo which is making me feel ill, when before all of this I felt perfectly fine. I am scared of course, but I have a good feeling about all of this. I am not ready to throw in the towel. I hope your husband is doing well. I have thought about a third opinion….not sure where to go. I live in the New Haven, CT area. I guess New York or Boston. I will go wherever it takes to remove this tumor. It just doesn’t make sense to me to not remove it! I have a chemo treatment this a.m. and I am going to disucuss with the oncologist what his thoughts are on this. I am due for my first scan in Feb. I am very nervous, but if all is well I am going to push for surgery or radiation. Will keep you posted.
Lillian
