cholangotango
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This is all great… but it’s not approved for CC, and from what at least one Onc I’ve spoken with tells me, getting it approved by Merck for off label prescription is near impossible. If anyone has any ideas how to get it (assuming insurance agrees to pay) please let us all know.
We met with my dad’s Onc today. He was very direct which I appreciated. Said dad’s liver function is not good – bili is at 3.5. Because an external drain isn’t an option, and stenting has now failed, which essentially takes clinical trials off the table he said the options were to:
A. Undergo experimental liver drainage work with the GI (laser / cholangioscopes) to open the blocked duct and improve bili drain,
B. Consider a trial that supports high bili which he estimated might have a 5% chance of working,
C. do nothing, in which case dad has 3-6 months.He said if it were his dad, he would suggest doing nothing and enjoying the last few months of life, because the other options weren’t likely to help. I said why not consider an off label application of Keytruda (aka MK-3475), to which he thought might be a good idea but he didn’t think we can get it approved by insurance, or by Merck since it was JUST approved (if anyone knows how to get access to this please let me know).
Dad, mom and myself discussed it and he still wants to fight. We all agreed to go with the option to clear the duct path through the experimental drainage procedure. The thinking is that if it accelerates his death then so be it, but it’s worth the potential upshot it may bring.
I’m devastated . Not the emotional type but have to admit this has hit me hard.
If anyone has any ideas for any of these strategies, or even a story to share about someone that was in this very same position and had a good outcome, it would be welcome.
Thanks Judym and Marions…. first to Judym….
I would love to learn that there is a better specialist / institution in the area that I’ve somehow missed. I’m at the point that I’m loosing hope, which is very stressful but inevitable in many cases I suppose.
The reason I chose USC and Dr. E. is because of the shear number of clinical trials USC is the primary investigator for in terms of liver cancer. Another Dr. on that staff “Dr Lenz” is world renowned. UCLA where my dad worked for 30 years had nothing to offer except chemo, which we know is a dead end. Also in my carefully calculated opinion (see earlier post) Dr. Hecht who is according to them the best they have, was inept.
If you know if another doctor in the area we should contact, please let me know. Thanks.
To Marions… I would ask if you know the cholangioscopes approach to yield good results. It’s a tough decision because it Dr Buxbaum the GI that would do the procedure said there can be trauma but I think if it brings the bili down dad would consider it. Do you know many folks that have had that procedure and have they found it to work ?
Thanks Lainy and Gavin for your encouragement. I definitely plan to get more done. Another opinion in Los Angeles is possible, but I don’t think my dad would go for it. Also, we’re at USC now, which is widely known for being THE place to go for CC in the Los Angeles area (we were at UCLA). What I CAN do is research trials that others say are working for them in Los Angeles, such as NCT02178722
They tried to re-stent dad but said there was too much tumor . Also Dr. El-Khoueiry informed me that upon further review of the CT/PET scans, both himself and the IR concluded a Percutaneous Biliary Drainage is not an option.
The GI that tried re-stenting emailed me stating “The readily accessible ducts have been stented and appear to be draining well. The system we cannot reach could potentially be accessed using cholangioscopes (small scopes which pass through our larger scopes) and potentially lasers or rigid dilators. There is no reason that this would impact tumor spread or growth but could cause local trauma such as bleeding. There are no high quality studies-only case reports/series-given the rarity of use.”
The GI called me back after conferring with Dr. El-Khoueiry and suggested we might not want to take the risk, but without it dad’s billiruben will not go below 3-4 or so. It’s a tough decision to make. Dr E suggested another trial / therapy that uses low dose (I think this is referred to as metronomic treatment) chemo, sounded like pico something.
Dad had his CT a couple of weeks ago followed by a PET scan because they found a new spot. Turns out the disease has progressed so they’ve stopped treatment. Now his billiruben is 3.5 which is beyond the inclusion criteria anyways, and the GI can’t do any more stenting so I feel our treatment options are limited. Damn this is a frustrating experience. I feel so helpless, and wish I can do something to help my dad.
I’m going to call about NCT02178722 on Monday. Seems others have reported some success but I fear it too may have billiruben maximums of 2.0. For the record, the early results from MK-3475 which is the PD-1 therapy used in this new trial was mentioned as having mediocre results with the trial site in AZ (sample size this was based on was very low however, so it can’t be considered indicative).
As for dad… he’s sleeping all day, and is extremely fatigued.
Thanks…Just realized I didn’t answer Melinda’s question about the trial.
In terms of side affects, there’s the usual laundry list of gotchas but from what we’re told and from what my dad has gone through, they’re reversible. The only side effects dad has had is a rash around his nose and neck which is common for this treatment, and resolved with a little creme (he looks fine now). He’s had a bit of diarrhea but nothing major, so I’d say in 2 months of treatment he has had no other side effects. There is the fatigue factor but it’s not clear if this is the MEK or dad because he was fatigued before starting treatment too.
Update – Dad was released from the hospital today. Turns out the cause of his delirium and fatigue was a clogged stent that sent his liver levels through the roof. Par for the course I’m told. A quick rotor rooter flush and plastic inner stent cleared things up (literally as his urine is now ultra clear). He now has his wits about him and is full of vim and vigor. Blood culture levels came back with no indication of UTI or any sort of infection, but they did test AFTER administering general antibiotics so they’re not sure if pre-admittance there was any sort of infection (not smart, I would have taken blood cultures before hand to know for sure).
So the take away for others interested in this trial from this one data point at least, is that the study drug is working, and this was not a related adverse event so he will continue to take it in a couple of days (A single 2 MG pill per day).
I noticed Melinda Bachini chimed in. Curious if you know of any other successful outcomes with the TIL NCT01174121 trial (or if anyone knows). I know it’s in Phase 2, but I’m so curious if Melinda is the only CC patient to have taken it that anyone knows of, and if not, what is the preliminary feedback.
BTW – Thanks to all for the well wishes.
Set back today. It’s actually the 2nd time dad has a hard time getting up, foggy mind. Last time was a month ago. Turned out to be Sepsis (infection of the blood). Same symptoms today, on way to hospital.
If anyone has had or seen a blood infection before, and knows the cause (doctors are reluctant to give their opinion for whatever reason), it would be good to know. Could it be ammonia build up from a malfunctioning liver, the trial drug ? Don’t know but would be good to hear opinions. Hope this is not as bad as I think it is. Last time this happened they gave him anti-biotics and he was fine a day later.
Well, I did some digging and I’m not referring to the similarly named tests from the 70s and 80s (also called Chemosensativity Assays) that measured cancer cell growth. Those have been discredited. This is different, this test measures programmed cell death, and has some very interesting results, with recent data.
In 2011 a trial compared it against molecular profiling (in this case Cervical cancer) and was found to have been more accurate in directing therapy.
See this: http://www.translational-medicine.com/content/9/1/94
Also, even though Cigna doesn’t cover the test, calling it “Investigational” because there’s not enough trial data, they do cite a number of studies and minor trials with very interesting results. They seem to insinuate that it might have merit. This is why I’m so interested in knowing more. Here’s the link to the Cigna review:
http://www.cigna.com/sites/careallies/pdf/ex223_tumor_in_vitro_chemosensitivity_assays.pdf
Thanks for being so welcoming, and for the advice.
You mentioned not recommending Banner MDA… curious why. Is it the level of expertise, the open mindedness of the doctors, the facility itself or its technology. More detail would be appreciated.
To be specific, I was planning to have dad see Dr. Dayyani (Banner MDA), then Dr Ramanathan at the Virginia G. Piper Cancer Center. The Mayo clinic in AZ wanted to charge 5K to Medicare just for a 45 min consultation which we felt was just wrong. Since dad isn’t a candidate for transplantation I didn’t think there was anything to gain by going there.
If there is any other Dr. or facility in the Phoenix area you might recommend or West of there (as mentioned, we’re in Los Angeles) please let me know.
