June 13, 2019 at 7:15 pm #98749Jj950Participant
Bglass – thanks for the response> It was VERY helpful. And, took a little edge off the anxiety of the increasing CA-19 numbers my brother has been receiving. We all just need to be patient to see what the imaging shows. My brother was diagnosed with stage IV right off the bate at 50 years old. He is young, healthy, and his Oncologist DID say they were going to be very aggressive with the treatment (hence, Fulfirinox), which totally makes sense from what you explained above. When first diagnosed his CA-19 was 5300. After cycle ONE it was 6,500, after cycle TWO 9,400, and after his cycle THREE 9600 (only a 200 point rise this time). Even though it rose again, we were all delighted to see it did not rise AS MUCH! His oncologist did tell us not to get too hung up on these numbers and said exactly what you did about going by how you’re feeling, and imaging. His bloodwork as far as liver enzymes, kidney function, etc. has been excellent. He is tolerating the Fulfirinox quite well!! Fatigue and some neuropathy are his biggest issues. We are all being optimistic and pray for a good scan on June 21st! Thanks again for the input.June 13, 2019 at 2:54 pm #98748bglassModerator
The gemcitabine with cisplatin chemotherapy combination is considered standard of care as a first line treatment for cholangiocarcinoma when surgery is not possible (“nonresectable”). First line means it will be the first chemo tried. The results of a past clinical trial (“ABC-01”) undertaken in the U.K. showed that the two chemos taken together are more effective than gemcitabine alone, and the results of this trial contributed to establishing this chemo regimen as a go-to approach for nonresectable cholangiocarcinoma.
Standard of care does not mean that everyone gets the same cookie-cutter treatment. Oncologists look at the specifics of each patient and determine an appropriate treatment regimen, which may or may not be gem-cis. Factors that may be considered include the patient’s health status, the location and aggressiveness of the cancer, and the oncologist’s own clinical judgment of what treatment is most appropriate and likely to be effective.
Chemos tend to lose effectiveness over time–sometimes because the cancer mutates and becomes resistant. When this happens, a second-line chemo treatment may be selected. Folfirinox, which I will describe further below, is an example of a chemo regimen that may be used as a second-line treatment for cholangiocarcinoma. There is not yet a second-line chemo considered standard of care for cholangiocarcinoma, to my knowledge, so there are several different ones reported by patients and caregivers on this board. Some have similar names – folfirinox is different from folfox which is different from folfiri. The selection criteria for a second-line treatment would be the same as mentioned in the paragraph above.
Folfirinox is a combo of four drugs: folinic acid, fluorouracil (or 5FU), irinotecan and oxaliplatin. The first drug is a vitamin which protects against some possible adverse side effects of the chemo, and the last three are the chemos. Because this regimen involves three chemo drugs, it is described by some (not all) patients as a tougher one to tolerate; however, it has shown effectiveness in slowing down the cancer. If you search folfirinox using the discussion board search engine, you will find stories on patients who had this treatment.
Patients tend to hone in on their CA 19-9 results as strong signals of how they are doing. My CA 19-9 gets measured every two months and waiting for the results always causes anxiety and worry. That said – interpreting CA 19-9 movements during treatment is best left to doctors. CA 19-9 does not always track disease progression and the treatments themselves for some patients will induce temporary increases in this tumor marker. This number is just one bit of information that is factored into the overall picture, which also includes imaging, patient symptoms, and other blood tests such as liver enzymes. I am repeating what my doctors have said about not paying so much attention to CA 19-9, and it is a reminder to me to try and listen to that good advice myself.
I hope the folfirinox is effective in bringing your family member’s cancer under control without too many side effects.
Regards, MaryJune 13, 2019 at 1:04 pm #98747Jj950Participant
B-glass – you mentioned that Gem-cis is the work hoarse for this type of cancer. I have a family member who is on Fulfirinox. Do you know what the differences may be? His CA-19s continue to rise – by the 1,000s… : ( Yesterday was the first result where the increase was slight from what it has been in the past – it only rose 200 pts (after cycle 3).June 12, 2019 at 6:59 pm #98745bglassModerator
Hi to Mims1924 and your husband,
Welcome to our community of patients and caregivers, but I am sorry you had to find us. As you describe, cholangiocarcinoma can be complicated to diagnose. It sounds like your doctors are working toward a good treatment plan.
Usually second opinions at the time of diagnosis center on whether or not the tumor is operable. Surgical opinions can differ among surgeons, and job one at the time of diagnosis is to figure out if the tumor can be surgically removed. Is surgery being offered, or are the doctors recommending chemo first?
Gem-cis is the workhorse chemo for our cancer – it is generally tolerable for patients with manageable side effects, and for most (not all) patients, gem-cis will slow down or stabilize the cancer.
If the doctors are taking a tissue sample, be sure to ask about having genomic profiling performed. Many cholangiocarcinoma patients have genomic defects for which there are targeted therapies in development and available through clinical trials. The Cholangiocarcinoma Foundation website has material on this important topic under the heading “Mutations Matter” that I would urge you to look at if you have not done so already. There is a wealth of good information generally on the website for newly diagnosed patients and their caregivers.
Going back to the topic of second opinions, there is a specialist map on the Foundation website that can help you find other medical centers and doctors with experience in cholangiocarcinoma. The specialists on the map are those which insurance data show to have the highest volume of cholangiocarcinoma patients. Given the rarity of our cancer, it is imperative to find a medical team that has a lot of experience with our patients.
I hope the remaining diagnostic tests help determine a good way forward with treatment. Please send any questions our way.
Take care, regards, MaryJune 12, 2019 at 5:13 am #98736Mims1924Participant
This is Mims1924’s husband and this is our fist post. We had our first meeting with an oncologist yesterday. Initial diagnosis was based on jaundice and nausea and vomiting and abdomenal pain. Had one CT and two ERCPs, stents in both sides branches of the bile duct into the liver. Brushings and FNAs don’t provide any info. Mass looks like Katskin tumor, with suspiciously enlarged lymph nodes nearby. No definitive pathology, so there’s another CT scan today (MRI’s not an option for us) and then a laparoscopic procedure hopefully in 5 days to get a definitive tissue sample. Plan for treatment is IV gemcitabine + cisplatin, then radiation + capecitabine pill. Some number of cycles (3 I think). Surgery to remove the tumor and any affected lymph nodes. Suggested that this could cure it. For a second opinion, the Mayo Clinic and MD Anderson are the two that I hear the most.
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