Topic: Treatment working!
My mom was diagnosed with CC March 9, 2011. The original mass of 18x18x18 cm and was pressing on the IVC creating decreased blood return and extreme fatigue. Her journey has been tumultuous, however, it has been successful.
1st line - April and June 2011
chemoembolization with doxirubicin
She has 2 TACE therapies each was successful. At the conclusion of the second the mass had decreased to 10x10x11 cm
2nd line - September 2011 began
GemCis systemic chemo every 2 weeks
Follow-up showed no disease progression and disease stability
3rd line - April 2012 began
Surgery for Alloderm spacer at MD Anderson (1st known for CC)
IMRT 6 weeks receiving 70Gry
Follow-up showed disease regression, but not resolution
Tumor continued to shrink
No chemo or radiation was needed for about 5 months
4th line - September 2012
restarted Cis/Gem every 2 weeks and added Tarceva
Follow-up showed disease stability until allergic reaction to Cis
5th line - November 2013
changed to Oxaliplatin/Gem every 2 weeks due to allergic reaction
Follow-up showed tumor is necrotic and continues to regress
Tumor size now 9x8x6 (Ca 19-9 is increasing during the treatment due to tumor necrosing and releasing Ca 19-9 and shows reactive/necrotic lymph nodes)
I type all of this because she is been going to MD Anderson since Sept 2011. They learn something new every time we go. The oncologist was showed that her tumor marker was increasing, however, the MRI showed significant tumor necrosis. This phenomenon occurred after her chemoembolization and was transient following the tumor dying. 3 treatments have proven to be successful from a tumor necrosis standpoint. Chemoembolization was the first to decrease the tumor bulk and relieve her symptoms of decreased IVC, the second successful treatment was the IMRT to the tumor. Following IMRT she was able to have a treatment free interval and felt great. The third successful treatment has been systemic chemo with Ox/Gem. With the tumor continuing to show increasing areas of necrosis, this has proven to be a successful treatment. However, one warning is that local oncologists did not think the Ox/Gem treatment was working due to the increasing Ca 19-9, they recommended to stop chemo. We decided to continue the treatment until we returned to MD Anderson for the follow-up scans. The oncologist at MD Anderson was amazed at how well the Ox/Gem was working and also surprised that the Ca 19-9 had continued to increase in spite of the scans showing the tumor was dying. Had we stopped chemo when the local oncologists recommended, this would have changed the outcome of the follow-up scans.
I cannot stress to patients enough the importance of getting to a large teaching facility that has experience treating Cholangiocarcinoma. We have met 3 other patients that have all lived longer than the predicted survival rates. My mom has outlived every prediction given to her. Her initial prognosis was 3 months. She has survived and is feeling great at 3 years. I quit reading studies about CC, because she has surpassed all of the published data. I am in the process of writing an article for the treatment of Cholangiocarcinoma, since very little data is available. Please know there are options!