June 22, 2019 at 8:34 am #98782HannahaParticipant
What a wonderful thing that your spouse has responded so positively to the gem/cis!
As usual Mary makes a number of good points about how to address the decision that stands before you. If I could add only one thing, it would be to recommend seeking a second opinion, (or maybe a 3rd, since it sounds like you have different doctors offering these options?). Like your spouse, my mom also had a strong response to the gem/cis that converted her initially inoperable diagnosis into an operable one. Our family started chasing down alternative opinions when it became clear that her tumor was shrinking. At first we were just looking to line up the best options for a “what’s next” plan after the gem/cis quit working, we but were surprised and cheered when Dr. Billingsley at OHSU offered us the possibility of a second chance at surgery. We were able to take that decision with greater confidence after two other doctors, including Dr. Kelley at UCSF and her original surgeon Dr. Hansen at Providence in Portland concurred that this was a good idea. Some hospitals go out of their way to make asking for a second opinion easier for you. UCSF, for example, offers a simple online portal: https://www.ucsfhealth.org/secondopinion/
Apologies if I’m just repeating things you’ve already considered.
HannahJune 22, 2019 at 7:45 am #98781bglassModerator
It is good news that your husband’s chemo has been effective. The two treatment options both sound promising but they are very different. Not being a medical person, I am not able to opine which is better but thought of some questions to look into.
Surgery with hepatic pump: The pump has proven very effective for many patients. There are two cholangiocarcinoma patient blogs where this treatment is discussed. Both patients had good results. Please note that the author of the second blog recently passed. One consideration is the hepatic pump requires tending (like a chemo port), and you should be sure you know what is needed in this regard.
Immunotherapy with radiation: This option is newer cancer medicine. I would ask for information on results to date seen in other patients with a similar genomic profiling to your husband’s. My layman’s impression with this option (you should ask the doctor about this if he has not already commented) is it may be more systemic and might catch any metastases outside the liver that might be too tiny to see. There is a Facebook group for immunotherapy patients with cholangiocarcinoma, which also might be helpful for information and questions. Matt Reidy, who did well with Keytruda and who posts on this board, is the organizer.
Even very promising treatments don’t work for all patients. The other question I was wondering about is should the option you pick not work out, would the other of the two options still be on the table. I know that in some cases, radiation makes it difficult to have subsequent surgery right away, for example.
I hope this is helpful. Regards, MaryJune 21, 2019 at 2:11 pm #98780Dancer41Participant
Hoping that someone here may have a similar experience and are willing to share. My spouse was diagnosed with cholangiocarcinoma about a year ago. At diagnosis we were told it was inoperable and put on gem/cis regime. There were multiple tumors on both sides of the liver but nothing seen outside the liver. After a year, the medicine has taken a toll but it seems to have been effective and now at a point where all that’s seen on the scan is the primary tumor. We’ve been offered two options: 1. Remove half of liver with tumor and pump inserted into other side to deliver chemo directly to liver. My understanding is that this would remove the cancer that can be seen on the scan through surgery and hopefully kill any cancer in the liver that’s not able to be seen with the chemo in the pump. 2. Keytruda (tests revealed a high mismatch repair) combined with radiation. My understanding is that the immunotherapy is targeted and somehow “boosted” by the radiation. If the response is good, this could kill the tumor and kill off any cancer that may be anywhere in his body – not just the liver like option 1. We are meeting with the different doctors to consult but was wondering if anyone here had a similar choice or any experience with either of these options.
So far, I’ve come to this board infrequently mostly to ask questions but as we go down this new path I’m hoping I’ll have some experience and information to “give back”.
Thank you all and wishing the best for everyone.
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