January 11, 2017 at 9:54 pm #92651mattreidyParticipant
Welcome! There is hope – see my story at http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=11456January 10, 2017 at 1:57 pm #92648
Quoting from the ARQ-087 trial thread:marions wrote:googily……Don’t hesitate from reaching out to Melinda, she is here to help. Regarding Keytruda pembrolizimab) (Merck) and Opdivo (nevolumab)( Bristol-Mayer’s Scibbs) can be pescribed off-label, but difficult to receive insurance approval.
What about the NCI Match trial? Could that be an option, or the ASCO TAPUR study?
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.)September 25, 2016 at 1:13 am #92602
googily……as far as I know, Foundation One does test for PD-1 and the PDL-1 ligament. It won’t hurt to double-check though.
Here is more on ArQ-97: http://www.arqule.com/wp-content/uploads/ARQ-087-iCCA-ESMO-GI-2016.pdf
MarionSeptember 24, 2016 at 9:08 pm #92605
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)September 24, 2016 at 7:42 pm #92604
googily….look into this NCI MATCH clinical trial as well:
MarionSeptember 24, 2016 at 4:13 am #92603
googily…..I would consider a second and perhaps a third professional opinion.
Additionally, your oncologist could reach out to the ASCO Tapur study team.
There are some variances to patient inclusion.
What if a patient does not have one of the drug-cancer-gene matches specified in the study?
The TAPUR Molecular Tumor Board (a group of experts convened by ASCO) will provide review and discussion of cases that do not fit the criteria specified in the protocol, as well as cases where the treating physician requests guidance. The ultimate treatment will be the decision of the patient and the treating physician. Some possible outcomes other than enrolling on the TAPUR study include:
Treatment on another clinical trial. The Molecular Tumor Board will be able to provide information on alternate ongoing clinical trials for consideration.
Treatment with off-label therapy outside of TAPUR protocol. The treating physician may recommend administering an off-label commercially available therapy that is not included in TAPUR.
Others, please chime in on this.
MarionSeptember 24, 2016 at 1:45 am #92607
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.September 23, 2016 at 12:30 pm #92610
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.September 23, 2016 at 4:35 am #92611
googily….I am so sorry to hear this. Your husband felt significantly better following the first chemotherapy treatment and yet his tumors increased?
Metastases to femur bone had been discussed on this site and I recall a study, which may be of use to you: https://www.ncbi.nlm.nih.gov/pubmed/25683996
Bone metastases are not unusual and often times respond successfully to radiation treatment. All in all, I wonder why this would interfere with the planned SirSphere?
Soon you will know more, dear googily and a game plan will be in place.
MarionSeptember 23, 2016 at 12:32 am #92612
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.September 14, 2016 at 2:11 am #92613
Sorry for coming on late, dear googily, but I wanted to chime in as well. Things are moving in the right direction. Most importantly, your husband is regaining quality of life and some sense of normality. How much more could we ask for?
Looking forward to the results of the genomic testing.
MarionSeptember 13, 2016 at 9:27 pm #92609
Thanks, both of you! We are appreciating every good day, and taking advantage!September 13, 2016 at 7:55 pm #92608middlesister1Moderator
What a wonderful update!! And, don’t worry about closing your eyes- although I prefer to see Mom’s numbers come down, there were some that the doctor said of course would still be elevated since you’re putting chemo in the body. I forget which “A” marker it is, but expectation is that Mom’s will always be slightly elevated from here on out. However, as long as doctors keep saying there is no disease at this time and liver is functioning fine, a little elevation is ok with us.
Best of Luck!
CatherineSeptember 13, 2016 at 6:09 pm #92650lainyParticipant
JD, what a good news post! Most excellent, indeed! I wish and pray for your hubby to keep going in this awesome directions. YIPPEE!September 13, 2016 at 5:36 pm #92649
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.
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