Gemcitabine or not with small distal biliary tumor post-Whipple

Caton, Welcome to the CC Foundation boards. We may not have all the answers here, but hopefully, you will find enough from our personal experiences as patients, and some of the very solid info from some of our longer members, to help you make decisions regarding your treatment.

I had a resection on Feb 28, 2014, for intrahepatic CC (5 cm and one very tiny one about 1/4th inch or less) clean margins (2.2 cm) , no neural or vasular invasion, no lymph node involvement . My left lobe of the liver was removed to get rid of the CC completely, which was fairly aggressive, considering the outlying position of the tumor and tiny sister tumor). I was urged very strongly by the Mayo oncologist to do adjuvant chemo (gem/cis) and was told flat out by the surgeon that I WAS doing chemo. In the end, though, it is the patient’s decision. After much reading and research, I decided to go ahead with the chemo, despite reading that there is no definite evidence that it works to kill microscopic CC that “could “still be floating around post surgery. I was aware of the possible side effects and issues of the chemo, but decided that IF the CC returns, I did not want to find myself in the position of saying, “I should have done it,” just in case it might have worked to kill any residual cancer cells. Despite throwing a blood clot from my leg to my lungs during the first chemo requiring a week in the hospital, losing all my hair, eyebrows and eyelashes, dry heaving almost every day past the 3rd round of chemo, having my hemoglobin go down far enough to require two blood transfusions, platelets go extremely low close to the end of chemo, developing some neuropathy in my toes, and suffering some kidney damage that appears to be irreversible/permanent…..I would make the same decision again…even with hindsight. Chemo has changed me….mostly for the worse…..but so has CC. However it has changed me, I will live with it…as long as I get the chance to “live”.

Some people are scared of chemo……how it will feel….etc. I am glad to share those experiences with anyone who is considering chemo…….experiences that might help you get past the first one and through the whole ordeal. I was terrified the first time…and sat there with tears down my cheeks, but the actual infusion was much less than I had built up in my mind that it was. As for the side effects and damage it did…..it’s a small price to pay, if it gives me insurance that the cancer won’t return. Of course, I can’t know the latter for sure….ever….but I at least know i did all I could.

Julie T.
Iowa Girl

Julie T.

Dear Caton, welcome to our remarkable family and CONGRATULATIONS on a successful Whipple! I have to go back 10 years ago but my husband had the same surgery also with a Pancreas problem. Before I go further, remember that was 10 years ago and as always everyone is different. At that time we were told by 5 ONC/DOCs that chemo would not work for the kind of CC he had or where the location was. Teddy was fine for 3 years when it returned to the same area and he had Cyber Knife and then was fine for another 2 years as it returned again. Looking back we never regretted the decision to do no chemo however, this is the biggest topic/decision on this Board as you will see as answers to your question appear. You can certainly go for another opinion and then make up your mind. BTW we lived in Milwaukee then and his Surgeon was Lyle Henry at Columbia Hospital. He was fabulous. Continued success on your recovery and please let us know how you are doing with your progress!