September 13, 2016 at 3:33 pm #93230middlesister1Moderator
I’m another daughter of a CC patient. I’m glad you found us. When Mom was diagnosed almost 3 years ago, reading the current and older posts on this board helped me tremendously. If was so unknown and we were in such shock that it took months to feel like we knew where to start.
I hope your Mom gets over the complications and I am so sorry she had to go through them. I hope moving forward this are easier on her (and you).
CatherineSeptember 12, 2016 at 10:44 pm #93228debnorcalModerator
Hello, Laura, and welcome to our family of caring and knowledgeable cc patients and caregivers.
Really wish you didn’t need to find us, but so glad you did. Cholangiocarcinoma is rare and best treated by a highly experienced multidisciplinary team of medical professionals that have treated many cases of cc. You will find a list of such centers under the “newly diagnosed” section.
I’m sorry that your mom has had such a difficult time post surgery. It is good, though, that she is in the process of having genetic testing completed. The results may show a mutation that can be specifically targeted by treatment. My best advice would be to find a medical center on our list of experts that is practical for your mom to get to for appointments and treatment, and let their team guide you/her on best treatment options based on your mom’s specific medical circumstances. They will know what options would be the most effective for her.
Wishing your mom all the best.
DebbieSeptember 12, 2016 at 8:33 pm #93229helpformom2016Member
I am so sorry to hear about your mom. I am here for my mom as well.
Mom’s was inoperable due to cirrhosis.
She is stage IV also.- Mets to the spine and skull base and a suspicious nodule in her lung base.
She is due for her 2nd round of Gemza/Oxaliplatin on Wednesday.
Her first round went pretty well. The hopes in doing chemo once it has spread is simply more time with us and to hopefully slow the spread. If we are lucky, maybe shrink some tumors.
We just dont know how it will respond.
This is a great place for information and community. I hope you find some of the answers you are looking for. This is a painful journey but you arent alone.
MegSeptember 12, 2016 at 4:38 pm #12769lw81Participant
Thank you for letting me join this group. I am here to help get information for my mother, age 59, who is battling stage IV Cholangio. She is currently being treated at the James/OSU, but we are exploring other options. Her mass was removed in late February, but she had several complications after and two emergency surgeries left her with a horrific open healing stomach wound that is taking months to heal. She has spent the past months recovering at home. Two weeks ago her scan showed new spots on her liver. Chemo is supposed to start this week (she was going to do GEM/CIS but her bilirubin is too high and they are now looking at 5FU & oxaliplatin) but I’m here to learn about other treatment options….to me it just sounds like the chemo would buy her some time. We are waiting on results from the genetic testing on her tumor. I appreciate all of you for sharing your experiences as we try to navigate the best options for her.
- You must be logged in to reply to this topic.