hamptonsarasota
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Byron,
Wanted to thank you for the warm welcome on my ‘introduction’ post first off. Second, go to Hawaii! We’ve never been, but my mother in law has several times and you may as well, right? Wish you serious luck and positive vibes on the ‘alternative modalities’ that you’ll be trying. Wish you the best…Wow, it is extremely humbling to read so many of your posts… I’m only 4 months in on my CC journey and I feel so extremely fortunate at this point that the resection got everything. There are so many of you that are not or cannot be in my situation due to tumor size or location and it is truly heartbreaking to read about it. My prayers are with you all. It’s one of those things where you ask why it happened to you and get no answer, yet the outcome of the surgery was a blessing in itself.
Margaret, I am so taking your words above to heart! I have been told that there is no standard protocol for someone who has clean margins after resection. No evidence that chemo helps or hurts, and no evidence that no chemo will help or hurt. Since I’m only 40, I’m doin’ the chemo! Whatever it takes, I want to do whatever I can to be here when my 13 and 11 year olds graduate from high school, graduate from college, find a significant other, get married, and ultimately give me the greatest gift of all…. Grandkids! I say a prayer every night for my doctors, for my family, and for the chance to make it that long and be there. It’s a one day at a time situation and you have to have a positive attitude. I start chemo Friday, I’m travelling for work in Houston and return home tomorrow. It’s probably my last ‘travelling’ trip for work until I see how I handle the chemo also. I am so thankful that I have found this board to read about others who have CC, it makes it so you don’t feel so isolated… I have tons of support from community, family and friends but having this ‘personal place’ online is very therapeutic as well. Thanks for letting me express myself, I wish all of you luck on your journey, I’ll be reading posts and try to contribute as best I can with my experiences once the Gemzar and ultimately Gemzar/Cisplatin start!
I wasn’t officially ‘diagnosed’ until the pathology report of my removed organs was done… My ERCP was done in Sarasota by Dr. Scott Corbett and once the biopsy came back ‘atypical suspicious fibrous cells’, we started researching and ended up going to Sloan Kettering in NY. My doctor who performed the liver resection is the Chief of Hepatobiliary Surgery, Dr. William Jarnagin, and he was fantastic. Very positive, and his staff that assisted him during surgery was great also. Dr. Matthew Weiss was a fellow under Dr. Jarnagin and he was excellent as well.
I have not started Chemotherapy yet (Friday the 13th is day 1) and it will be Gemzar initially with Cisplatin being added if I tolerate the Gemzar well. My local oncologist in Sarasota, Dr. Richard Buck, is excellent. I haven’t had an appointment that lasted less than a half an hour. He answers all of your questions, is very easy going, and very knowledgable as well. He has also been very willing to collaborate with my surgeon’s oncology counterpart at Sloan Kettering, Dr. Yelena Janjigian. I actually sent an email to Dr. Javle at MD Anderson and within an hour, he answered me! His recommended treatment was very similar to what my current oncologists recommended as well.
Since CC is so rare and there are no specific adjuvant therapy protocols, the more the merrier if you ask me! In any event, I’m about 4 months post surgery, and my most recent CT on 12/27 was extremely clean. Only difference, the remaining piece of my liver grew down to the left so my anatomy is way off. No liver on my right side, small intestines are there instead (very loud after I eat or drink…). Liver is almost the same size as it was originally and all bloodwork showed liver function 100% normal. Let’s see how I do with chemo…
Met with the oncologist, Dr. Buck, and we’re starting off with Gemzar only for a few weeks to see how I handle it. If I’m handling well, they will add the cisplatin. Not sure of the overall duration, and pretty sure radiation with chemo for a while after the chemo only is done too. Optimistic at this point, as long as I can hopefully continue to work out and it doesn’t take too much out of me I’ll be happy but can only really wait and see how I’ll feel after the first dose. CT of upper chest Friday AM, then first chemo dose at 1pm on the 13th next week. We’ll see!
Thanks all for the welcomes. And yes, I do consider myself lucky that the cancer was completely removed and was only located in the bile ducts having not spread anywhere.
Margaret,
I’ll be honest, I did come across your ‘moved’ post and read through a lot of it, you went through a very tough time and Tom put on a hell of a fight up until the end. He’s definitely in a better place now and without pain.I’m headed to Chemo with optimism and trying to get back into shape. I left for NY on 9/5/11 at 189lbs and fairly muscular. Returned home on 11/1/11 at 165lbs with considerable muscle mass reduction. I’m back to 181 now, have been back on strength training, and did my first ‘official’ 2 mile cardio workout yesterday after the drain tube was removed in 26:30, easily the best cardio I’ve done in 3.5 months. I’m going to be doing cardio every day and weights 2-3 days a week working up to the first Chemo session. No clue what I’ll be able to do after the Chemo, I’m planning on a slow weekend to see how it goes and hope to be able to rest Sat/Sun and try to continue the exercise routine M-Thur. Only time will tell. Thanks again to everyone!
Derin
