ARQ-087 Clinical Trial : FGFR2 Tyrosine Kinase Inhibitor

Thanks, Marion, and Lainy, and Kris.

It sounds like the Georgetown Keytruda/interferon trial is probably 2-3 months away from enrolling, so I think we may go with second-line chemo in the interim, given how good he is still feeling overall. (except for the neck pain, so there might also be some radiation first)

But we do also want to see what’s available at NIH, though we are a bit mystified about exactly how to go about that, whether we just find a trial we are interested in or try to get seen there and have them triage him toward what they feel are the appropriate trials. Maybe I need to send up the bat signal for Melinda B. (Also need to tell her how much time I’ve spent in Billings over the years, despite being from DC!)

I don’t want to muck up this trial thread further, so I’ll head back to my original thread:

http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=15012&p=2

I was looking for you two on Thursday. Dr. Damjanov and crew aren’t very talkative about other patients. Dr. Denlinger knows she can give out my number or email to any fellow cholangio patients. No HIPPA here! lol
I’m so sorry things didn’t work out, and there are more mets to his spine. I hope you can get into Keytruda, too. At least that will be much closer, too!
The optivo is also with Something, possibly interferon. I have to meet with Dr. Denlinger to get the details. Next Monday is that day.
And Lainy… Thanks so much. You are a very special lady, too.

Unfortunately, Bill’s first set of scans, after 8 weeks on the drug, showed most of his tumors increasing in size, so his participation is over. We’re looking around now for other trials. He now has bone mets in basically every vertebrae, but they are small and not impinging on anything yet or having any structural issues. One may be causing a stiff neck, but otherwise he’s doing okay.

He’s still only done gem/cis before this trial, so there’s always going to Folfox if another trial doesn’t leap out. (We are interested in one coming at Georgetown for advanced cholangio with keytruda + interferon, but not sure how long it’s going to take for it to actually get underway.)

Sigh.

But at least we did meet kris a few weeks ago!

Actually, we’ll be back next week, last of the weekly appointments, so then we’ll be on the same every other week schedule.

I think we’re just missing each other. We got here at 10 and are now in the exam room, waiting. I keep looking, though!

Googily, I have met Kris and she is as kind and fun as she is “tall”. She also looks like her picture here. She is excellent company and a real champion of a survivor!

Kris, that’s such great news on not needing the stent replacement. (Not so much on the vision stuff, though)

I admit to looking around the waiting room at Penn to see if maybe I recognize you.

Bill is now midway through his third week on this trial–the only side effect he is having is nausea, which has been a problem for him throughout this journey. Unfortunately, the trial doesn’t allow Zofran, the drug which worked so well for him before, and we’re still trying to find an optimal combination of Ativan and Compazine that keeps the nausea at bay and doesn’t have him sleeping for 16 hours. (Also trying to get him to eat smaller meals more often, but that continues to be a challenge–but at least that shows his appetite is still good!)

His AST levels have bumped up above normal, and ALP is still high (probably thanks to the bone mets), but all other liver functions are great.