Husband’s Case

Quoting from the ARQ-087 trial thread:

Our oncologists at both Sibley and Georgetown seem to feel that the combo pembro/interferon trial, which is Phase 2 and specifically for cholangio, is worth waiting 2-3 months for, and that given Bill’s still very strong performance status, trying Folfox first should not knock him back too far.

It’s a bit of a risk, since I know Folfox can be harsh, but he sailed through Gem/Cis, and even with a 10-cm main tumor and numerous smaller tumors, his liver functions are still very good.

He also probably needs radiation on a met at the base of his cervical spine that is causing him trouble, so that might have an impact on the schedule of next steps as well. We meet with a rad onc next week.

If you looked at him today, seven months after diagnosis, you would not suspect for an instant that he has stage 4 cancer. So I think that makes everyone feel like he has a little breathing room.

(All this said, I am also now seeing a Keytruda phase 2 trial at Hopkins, which I’m surprised our Hopkins/Sibley oncologist didn’t know about. Asking about it now. But I wonder if they prefer the idea of a combo therapy for him rather than just straight Keytruda.)

Thanks, Marion. We are in DC and can easily travel, but it’s good to have NCI-MATCH at so many places nearby. (ARQ 087 in Philly is also of interest.)

And I agree on second/third opinions. Will be reaching out on Monday.

The oncologist is ordering a PET scan–I know she’s doing it to look for more mets, but I’ll be interested to see the activity in the existing liver tumors. (My brain is still keying on the dropping CA 19-9 numbers.)

And, a question–is testing for PD-1 receptor status something that would show up in Foundation One results, or is that just gene mutations and an antibody test would be different? (Thinking down the road toward Keytruda possibilities)

Thank you, Marion. His lessening pain, dropping 19-9 and ALP, and normalizing AST and ALT all had us believing that the tumors had to be responding well. We can’t be 100 percent sure that the bone mets didn’t appear during the six weeks between the original MRI and the start of chemo, instead of during the three cycles of gem/cis, but it’s still a shock.

The interventional radiologist did mention that the tumors appear to have some necrosis, but he didn’t really refer to it like it was particularly good news.

We are waiting for a comparison of the chest CT from yesterday with one taken right before chemo started, for a more accurate sense of exactly what the chemo response was. I think at best we are looking at either truly stable in terms of size or maybe 5% growth. Not terrible, to be sure, but not a response that will get the job done long term.

But maybe the Foundation One test will have some good news in it.

We will regroup, but it’s hard to not see this as a let down after all the other good signs leading up to the scans. But his liver remains very healthy at least (other than those tumors, anyway), so we have room to keep being aggressive.

Unfortunately, despite the 19-9 and ALP both heading steadily downward, and his other liver functions all looking normal, the scans today showed that the tumors have perhaps grown a little after three rounds of gem/cis. Not more than 20%, so technically considered stable, but with all of the other positive indicators–and with him feeling so good and tolerating the chemo so well–we admittedly had been hoping for something better.

The MRI also shows probable mets on his spine, though we can’t say with 100% certainty that they weren’t there when chemo started, because the only pre-chemo MRI was taken six weeks before the start of treatment.

They are also looking at a potential met in his lower femur, just above his knee, a most odd place.

We had met with interventional radiology today to discuss Y90, and they have started the paperwork for the necessary “road map” tests, but there is going to be some discussions with them and our oncologist about the exact timing — and I wonder if the additional news of the bone metastases would change their minds?

Needless to say, the wind has come out of our sails right quick.

We are hoping to finally get the Foundation One results back any day now–it was supposed to be done in August but “there was a problem” and they are doing it again, we are told.

With this weird lower thigh metastases, and his AFP number having increased from the 2nd to the 3rd gem/cis cycle, and the Foundation One “problem,” I’m starting to wonder if this is a mixed HCC-ICC.

Hopefully our oncologist will have some clarity for us on where we go next within the next few days.

Thanks, both of you! We are appreciating every good day, and taking advantage!