Need guidance

I know each person’s case tends to be unique, but I am – desperately – reaching out today to ask the many people who have been involved with this disease, what else can I be doing ?

In brief, we have been battling ICC for 13 months. We made very significant gains while using Gem/Cis for 8 cycles. The tumors (many dispersed plus very large tumor in left lobe) within the liver were reduced and the lymph nodes seemed to disappear. We moved to Gemcitabine alone and the tumors within the liver began to grow,

At that point we opted for a clinical trial (NCT01285037 – part D) which had shown good results in the initial phase. However, shortly after starting that trial, my wife had an allergic reaction to the chemo drug (cisplatin) which was a key part of this phase. We tried to go with the Met inhibitor drug alone (no longer paired with cisplatin). However, the tumors grew quickly in AND outside the liver. We are almost back to where we started.

We just started Folfox as the next chemo regimen. While its too early to determine its effectiveness, my understanding from all I’ve read is since we’ve been through the Gem/Cis – and can’t go back, if the Folfox doesn’t work, there is no other chemo regimen that I can find as the next option.

If others have gone down a similar road, what options are there beyond this chemo. We cannot do liver directed therapy at this point because the growth in the lymph nodes seems even more aggressive.

Beyond chemo, the only trial I believe would offer some potential to stem this disease is the trial (NCT01174121) that has shown promise with one of our members. I am not even sure we would qualify, but if the Folfox does not work it makes us more eligible (sadly).

I am hoping for a path that others have taken which I have not yet found.

Thanks, in advance, for your help.
Carl – for Lynn