I am so sorry to hear about your mother’s recurrence and the challenges that she is facing. My wife Lisa is in a similar situation. Lisa was diagnosed with ICC in May of 2013. At the time of diagnosis, she was inoperable due to multiple large tumors in both lobes of her liver and positive distant lymph nodes. Fortunately, she was able to have a life-saving resection surgery after six months of chemotherapy treatments, including 8 rounds of folfirinox (folfox plus irinotecan).
This past February, we learned that Lisa had a recurrence in the form of multiple small nodules in both of her lungs. Like you, we pursued the TIL trail at the NIH, but after an extensive review of Lisa’s medical records and scans, we were told that the lung nodules are currently too small for her to qualify (the nodules range between 2 and 9 mm).
Lisa underwent a thoracotomy surgery at MD Anderson in June. The surgeon was able to remove 4 of the 12 nodules and confirmed that the lung lesions were metastatic cholangiocarcinoma. Unfortunately the genetic testing did not reveal any mutations that qualify for clinical trials. Lisa is currently being treated with a combination of xeloda and gemcitabine. Although folfirinox was very effective in treating her initial liver tumors, Lisa is not able to have this type of chemotherapy any longer due to persistent neuropathy that she still experiences as a side effect. Folfox and folfirinox are tough treatments with some unpleasant side effects. However, in Lisa’s case, this regimen was very effective in shrinking the tumors. I truly hope that your mother is able to have similar results and that the side effects are not too difficult to endure.
We are very hopeful that Lisa’s current chemotherapy regimen will be effective in shrinking or even eliminating her lung nodules. In the event that this treatment is not successful, our next step will likely be to try keytruda. Keytruda has demonstrated great promise for melanoma, and some early studies and anecdotal cases have shown some success for solid tumors as well (although clinical trials are ongoing). Because there are not currently any openings for Keytruda clinical trials for biliary tract cancers, we will likely explore using this drug on an off-label basis. Lisa’s medical team believes that Keytruda could hold promise because her tumor expresses the PL-D1 antibody. If your mother has not had this testing, I would definitely recommend that you pursue it to see if she would be eligible for similar immunotherapy treatments.
You seem to have a very good handle on your mother’s treatment, so I am not sure that I have much additional information to offer aside from the recommendations above. Your mother is very lucky to have you in her corner. We will keep her in our thoughts and prayers.