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I also use Google to search this site when I’ve exhausted the Search button above. Just go to Google.com (or the Address bar in Chrome) and fill out the search box like this:
site:cholangiocarcinoma.org fgfr
Which results in:
https://www.google.com/search?q=site%3Acholangiocarcinoma.org+fgfr&oq=site%3Acholangiocarcinoma.org+fgfrThanks, Marion. We are proceeding with paperwork to get Bill enrolled locally in MATCH’s arm for the FGFR mutation/AZD4547 drug.
We are being told that they won’t have to do a new biopsy, though they will do the testing themselves, even with a just-completed Foundation One test.
And we will be avoiding FOLFOX if at all possible before the trial. But uncertainty on the timing of the restart of enrollments is making this even more uncertain than I assume trial enrollments usually are.
We were told by our oncologist today that, at least in the Johns Hopkins system and also at Georgetown University, enrollments in MATCH are currently on hold. I guess it has something to do with changes in the program that then require the hospitals to have the protocols go through their administrative approvals again?
Our plan is for Bill, with his FGFR2 mutation, to go into the AZD4547 arm. if they accept him. But if they don’t get enrollments started up again by the end of his four weeks off of chemo (he’s at two weeks right now), he will begin FOLFOX.
Marion, do you have any additional information on this?
Also, I have not found on the boards anyone who seems to have experience with this AZD drug, though it’s in Phase 2. I had hoped for BGJ398 or ARQ 087, but openings for those would require travel or Phase 1. We’re not ruling that out (especially if MATCH continues to be on hold), but of course would prefer staying close to home.
In the meantime, his liver functions continue to be normal and/or normalizing (ALP dropped again on today’s blood work). Our oncologist admitted to being as absolutely shocked as we were that gem/cis didn’t work, given how well he seemed to be responding. But that’s why the scans are the only real arbiters….
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)
Unfortunately, the news got worse today, with one bright spot at the end.
They’ve officially declared that my husband isn’t responding to gem/cis, after 3 cycles and with confirmation that two mets to his spine grew during the chemo. The tumors enlarged a bit as well.
The interventional radiology team says that, with the bone mets, they don’t feel doing Y90 would be an appropriate step. (Given how healthy he is other than the tumors, I am pushing back on this a bit.)
There is also some discussion as to whether this is even cholangio, as I had begun to suspect. The pathologists are apparently looking for other “stainings” to do to see if they can get a better handle on the tumors’ real lineage.
The Foundation One report is back–with “adenocarcinoma of unknown primary” listed at the top as tumor type. And here’s the only piece of good news–he has the FGFR2 mutation.
The question at this point is whether to first go to FOLFOX (or FOLFIRI) and let that play out before heading into clinical trials.
All advice–on any of this!–is much appreciated. We are pretty devastated to have gone from “feeling better! 19-9 dropping! strong liver numbers!” to “the tumors are growing, there’s mets, and we aren’t even sure this is the right cancer anymore” within a span of about 48 hours.
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 for a great post, and for being such a great fighter, no matter what Ms. Sally Toad is trying to force on you.
A good update on my husband–
(he was diagnosed in late June with stage iv unresectable intrahepatic CC, with an 8-cm tumor spread between both lobes and multiple satellites, plus one or two suspicious lymph nodes nearby)
He has his second infusion of gem/cis round 3 tomorrow, and he continues to handle the chemo better than we could have possibly hoped, with life seeming pretty close to “normal,” other than some fatigue that isn’t very strong and comes and goes. The abdominal discomfort (tumor presence?) he was having back when he was diagnosed is gone as well.
His AST/ALT numbers have normalized, and his ALP is coming down. In fact, other than ALP and low-but-not-critical red blood cell-related numbers, everything in the CBC and CBM blood tests is now in the normal range. (Bilirubin has always been normal.)
His 19-9 is also coming down, though we didn’t get a baseline from right when he started chemo, only from about four weeks beforehand. His AFP is up a little, but I’m closing my eyes on that one!
His first scans are next week, along with first discussions about whether he’s a candidate for Y90. We have our fingers crossed for good news, though are not counting our chickens before they’re hatched.
We’re also expecting the results of the Foundation One testing in the next week or so.
I don’t post much, but I read everyone’s posts and comments, and I thank everyone for the time they take here. It’s so incredibly helpful.
My husband is having his fourth gem/cis infusion right now and has had almost no side effects, and in fact has felt better each week, compared to how poorly he felt before chemo started. He takes anti nausea meds three times a day, steroids for the first few days after each infusion, and oxycontin extended release twice a day. He’s back to walking every day, even going to a tennis clinic, and has gained back the weight he lost.
Everyone is different, and we are always prepared for the side effects to increase, but so far the chemo and the right meds with it has actually brought back his quality of life.
Hi,
My husband’s path was very similar–it was only when the liver team at Hopkins met to discuss his case that they all decided that it’s intrahepatic CC, after CT scan, MRI, blood work, and biopsy in and of themselves weren’t conclusive.
I’m so sorry you are traveling this path, but you’ve found the right place for people who understand and will help you along.
The only thing that was working for my husband’s nausea a few weeks ago was, believe it or not, over-the-counter Benadryl. If you are throwing everything at the wall to see what sticks, and haven’t tried it yet, it can’t hurt. (He also received it via IV once in the ER for nausea)
Editing to add that his nausea went away when we completely reworked his meds three weeks ago (we think it was mainly the morphine and the dilaudid). He also absolutely could not handle the Zofran that dissolves under the tongue (the taste just hit him totally wrong when he was already nauseous). But just to be safe now that chemo has started, he takes the Zofran regular pill twice a day, and Ativan once before bedtime, and maybe a Benadryl at noon if he needs it.
A follow-up to say that DH has done so well through his first two infusions–he actually feels so much better than he did in the month leading up to getting chemo started. We think a lot of that was a combination of tumor pain and not handling the morphine well at all, even with anti-nausea meds. But the meds lineup got completely reworked, and here on Day 12 (with gem/cis infusions on Day 1/
, he is running errands, cooking again, and eating plenty. He has some fatigue once the post-infusion steroid course is finished, and there is some trouble with his glucose (trying to get his insulin needs straightened out), but it’s been nice to “have him back” for the past few days. We’re even taking a quick get-away by train for a couple of days during his chemo rest week.I am (unfortunately) well aware that these things can change on a dime, but his currently improved status is a great gift.
That is so great, Catherine!
I admit I have been reading your posts very closely, even though our situation is slightly different since my husband has multiple tumors in his liver, on both sides. Our plan is to be doing the Y-90 at the end of his 3rd gem/cis cycle, in about mid-September. But if we could get a good response from the gem/cis to start the shrinkage and then a good ZAP with the Y-90, to “kick the can down the road” a bit….
Do you know where Dr. Moeslein is going? (We are at Hopkins but had noted his name for down the road when we may need other opinions, so I am wondering if he’s leaving the area completely.)
