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Lainey, Duke, and Melinda,
Thanks for your responses to my post.
I started with one oncologist who was gloom and doom and fortunately got into Mass General by the end of that week and had my first chemo the next day. Since the treatment was pretty standard, my doctor at Mass General suggested I get it closer to home. He recommended an oncologist at the Helen&Harry Gray Cancer Center at Hartford Hospital in Hartford, CT. So my first two treatments were at Mass General and then in Hartford where I am continuing my treatment. We visit Mass General after I get a scan for that doctor’s input. My oncologist in Hartford consults with my oncologist at Mass General. We’ve got the best medical team we could have with top doctors. Both oncologists are very knowledgeable about CCA. My oncologist at Mass General is the director of the gastrointestinal Cancer unit. I have intrahepatic choangeliocarcinoma.
I’m going to an ENT this week because my ears get blocked when I’m around a crowd of people. Not sure why this happens and can’t wait to find out.
This is my life Duke and that’s exactly what I’ve done, demanded the best. I’m a young 60 year old with a lot of living left to do.
Thank you all for your kind words of encouragement.Bea G.
BEA Strong – BEAlieve
Dear Bgeo,
Welcome to this site. I am glad you are tolerating chemo so well with good results! I too, had the gem/cis combo for about 6 months. I developed the ringing in my ears as well, also slight hearing damage which I still have both to this day and it has been about 4 years since treatment. I am glad you onc was on top of it to lower the dose right away.
It is definitely comforting to have options…glad you have had some genetic testing done. I celebrate my 5 year mark today thanks to an immunotherapy trial at NIH! All my best to you and please keep us posted on your progress.
Hugs and prayers,
Melinda B.I started with cis/gem but went almost immediately to carboplatin/gem when I developed increased ringing in my ears.
It’s good that you have the genome testing done right away. Saves delays later.
Don’t hesitate to ask your oncologist any questions. Some take it better than others. Find out what his/her experience is with CCA. You want the most knowledgeable team you can get. It’s your life; demand the best.
Do you have intrahepatic, Klatskin’s tumors, or distal cholangiocarcinoma?
Duke
Dear Bgeo, welcome to the best place to be for CC support. Congratulations on some shrinkage and how fortunate you are to not have any of the other effects to endure. We have had quite a few others with your diagnosis and the chemo actually did it’s job to the point they were offered surgery. Mind if I ask where you are being treated? I find it so weird that most of our members are from the East and West Coast. Keep up your good work, good attitude and please keep up with us.
Looking forward to your next good post.I was diagnosed in May 2014 with stage 4 cholangiocarcinoma. I went for an annual check up and my liver enzyme count was elevated. I have a large tumor in my liver and several nodes on my lungs. I have been on gemcitabine and cisplatin since late May. I have no physical symptoms. I’ve tolerated chemo well until I recently began having ringing in my left ear. My oncologist reduced the cisplatin. Thankfully I’ve got a wonderful support system and many people praying for me. I’m convinced that I will survive this crazy diagnosis. I get fatigued for a few days after treatment and that’s it. I have a great team of doctors and feel fortunate. My large tumor has gotten smaller on each of the CT scans I’ve had to date. Some of the lung nodes have also gotten smaller. I have been genome tested and a FGFR2 gene mutation has been found. There are currently clinical trials for this mutation. Since I’m doing well, I actually don’t qualify for the trial, but if things should change, it’s confiorting to know I have another option to survive this cancer. I’ve read some of the posts on the discussion boards and find them very interesting and many of them encouraging.
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