googily

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

Nancy,

I am so very sorry. I lost my mother a few years ago, and know the pain you are feeling, even when you know that she is not suffering anymore. Take care of yourself in the coming weeks and months.

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.

My DH did indeed start this trial, last week. Six days of the pills so far, and no obvious side effects yet.

Yes, he had his CT scans done this morning. And tomorrow he’s getting a Zometa infusion to strengthen his bones (okayed by the trial team, even though he hasn’t started the trial yet).

We are still in his washout period, so at least right now we aren’t feeling like his care is being alarmingly delayed.

We also saw a different oncologist yesterday, for a 2nd opinion, at Georgetown, who agrees that at this stage, particularly given how good Bill still feels, that clinical trials are the way to go. I must say that it is becoming much more of a common refrain from oncologists that “chemo really doesn’t get you very far” with cholangio. They are all about the clinical trials, as many of them as you can daisy-chain together.

It looks like my husband will be starting this trial in November, if biopsy bureaucratic issues can get handled to get him set up without too much delay past his four-week washout date. (We are pretty sure his lesions are growing, so this makes for a sort of tense waiting period.)

We had looked at the NCI MATCH AZD 4547 FGFR inhibitor trial, which is close to home, but I wasn’t all that impressed with the numbers they had reported in the Phase 1 trials. Driving to Philly isn’t optimal, but isn’t the end of the world, either.

(This ARQ trial is now a Phase 2 trial for intrahepatic cholangio patients with an FGFR2 fusion.)

They definitely need to come up with the appropriate way to use Foundation One results–Bill got his Foundation results back a month before starting to apply to MATCH and now still has to wait for the MATCH folks to redo the testing themselves. They hope they can get the testing done in about two weeks, but there was also time spent getting the sample back from Foundation One, and then a billing/insurance snafu with the MATCH folks that delayed things as well.

Hi Rebecca–

Your feelings are absolutely valid–it just makes it seem that much more unreal to get a diagnosis like this and not be feeling it.

But as others have said, don’t focus on the numbers. Focus on how you feel. My husband, like you, now feels all but normal except for chemo fatigue. His oncologist (who admittedly sometimes seems a bit bewildered by it) keeps saying, “Well, you look good, so I’m going to go with that.”

And, also as has been mentioned, if you can get yourself to one of the comprehensive cancer centers with a lot of cholangiocarcinoma experience, it will be an immense benefit. You should also be sure to get genomic testing done on your tumor, to see if you have any mutations that might currently be targeted by clinical trials.

And keep reading these boards, using the Search function liberally to find others with similar diagnoses to yours, and how they are doing.