October 18, 2018 at 4:57 pm #97671
Biliary pneumonia was also a phrase I had not previously come across. It is apparently not very common.
What this refers to is a situation where there is “communication” between the biliary (bile duct) system and the bronchial tubes, that permits bile to move upward toward the lungs. This might happen, for example, if cholangiocarcinoma tumors press upward from the liver through the diaphragm. Bile duct blockage or adhesions near the diaphragm from surgery can also be causes. Symptoms can include coughing or finding bile/bilirubin in the sputum.
I did not find much written on biliary pneumonia. My impression is that this condition can range from very mild to more severe, and the degree of severity determines whether/how it is treated. From what I have read, for very mild cases, it might resolve on its own.
Since I am not a doctor, please note this is a layman’s summary of what I could find in medical literature. Any concerns about this condition should be directed to doctors.
Regards, MaryOctober 18, 2018 at 4:40 pm #97670
I am sorry to hear your father’s participation in the immunotherapy trial is not producing the results you had hoped for. It is a difficult situation that your father’s doctors are not giving you a clear picture of options for additional treatments. I hope that the next liver function tests are better and point to next steps.
If your father continues to feel pain and suffer from constipation, please push the doctors to find solutions. Are there palliative care resources available to help your father maintain a good quality of life?
Although it may not be needed at this point, I do recommend that you look into what resources are available in your area for hospice care. If your father at some future point elects to transition to hospice care, having already done the research will benefit him and your family.
Facing a decision about whether to continue to seek treatment can be wrenching for patients and their families. Complicating this, sometimes doctors prefer not to speculate about the future course of the cancer. Speaking as a patient, it is important to listen carefully to discern a patient’s wishes, to pick up on a patient’s signals about whether further treatment should be the plan or to focus on maximizing quality of life. Your messages on this board are testament to your incredible efforts to help your father find the very best care. I hope the doctors can offer third-line treatment options that can stabilize the cancer and ease its symptoms. Your research to find additional treatment options will help as well.
It is often commented what a roller coaster this cancer can be. I hope this rough spot passes and you get more clarity from your father’s doctors about a way forward. Let us know how his next steps evolve.
Take care, regards, MaryOctober 18, 2018 at 12:20 pm #97669ElodieParticipant
My name is Elodie and I’m Priscilla’s sister. I am really sad to hear about your dad 2nd scan. I understand your feelings… I have never heard about biliary pneumonia. It seems a weird term… My first langage is French so that’s maybe why. Did a doctor mention you this term or was it only on the report? Also, is it the AST and ALT who are high or only GGT?
I looked also for Yeliva… maybe it is a good option. Do you know what are the side effects?
We are thinking about you and your dad.
ÉlodieOctober 18, 2018 at 8:46 am #97661
Yesterday at the NIH we got my dad’s 2nd scan and there was peritoneal growth and dilated bile ducts. so they don’t think immunotherapy trial is working.
I hope somehow we will have a delayed response – although the trial doctor was very pessimistic about pseudo-progression for biliary cancer. But they don’t have the data yet from this trial, so i don’t know how he could know that… we were only the 2nd biliary patient on the trial, so how far along could the timeline be? Maybe he means other immuno trials… but what if the ablation made a difference? or the combo of anti pd-l1 and anti ctla4? They seemed to really discourage the idea that we try more immuno.
The labs showed elevated LFTs (all over 3 times normal upper limits) but low bilirubin. Perhaps related to the dilated bile ducts – which on the scan it says may be caused by hilar infiltration? Does this mean he has mets to the lung now?
Nobody mentioned this but I read on the scan report that they saw biliary pneumonia?! I didn’t know that was possible, or what we are supposed to do about that.)
So they said just wait and see how LFTs are next week – so we’re just supposed to hope it goes down on its own? They said with elevated LFTs, he can’t do this or other treatments anyway. I can’t tell if they were just beating around the bush because the dilated bile ducts and elevated LFTs without clear solvable cause are so dire? I have no idea how dire it really is.
His constipation pains get so bad (even with constipation meds) and they mentioned that happens with peritoneal mets. So is there nothing to be done about it??
But when he’s not having one of those pain episodes, he is strong enough to swim 30 laps almost every morning! I mean, of course he is fatigued and much weaker than before but it just seems impossible that there is nothing else we should try. Are they trying to tell us the end is near? I am so scared, and no idea what to do next.
I was looking at the Yeliva expanded trial because they had one complete response, but I’m scared of side effects and whether this will just be harder on him. How do we give him the best quality of life possible for as long as possible? I don’t even understand how palliative care could help with his constipation/digestion pains if it’s stemming from peritoneal mets… just mask the pain and knock him out with painkillers?!?
I have no idea how terribly to take this news… more scared than ever.September 17, 2018 at 7:09 am #97517
I wanted to share a quick update that the first scan on my dad’s immunotherapy plus ablation trial at the NIH was stable (in August)!
I hope the stability is a good sign, and that we’ll see even better on his next scan in October. (His CA 19-9 is very high but I guess we truly don’t know how the immunotherapy plus ablation could be affecting that number as well…)
I’m not sure what trial to pivot to if this doesn’t work – is there another promising trial for people without known targetable mutations? (We have K-ras (q61h) and Smad4…) If anyone has any ideas, please let me know… thank you!
LiliAugust 15, 2018 at 8:53 am #97370
Dear community, I hope everyone is hanging in there.
Thank you so much Mary and Positivity for your kind and helpful replies last time. I’m sorry it took me so long to reply – I’m always so overwhelmed! I wanted to update you on what we ended up doing:
– On 6/25/18, my dad entered an immunotherapy trial at the NIH pairing 2 checkpoint inhibitors with ablation.
He has had 2 infusions so far of anti-PD-L1 (durvalumab) and anti-CTLA4 (tremelimumab).
On 8/2/18, he had radiofrequency ablation to 2 small new perihepatic lesions. The hope is that the neoantigens released by the ablation will help the primed immune system recognize the cancer and create an abscopal effect (getting rid of all the cancer!)
He recovered well from the ablation and just a week later was exercising again (he has also gained some of his energy back from not being on chemo since his last folfiri May 8th.)
– On 8/11 (this past Saturday), he woke up with a fever and feeling super fatigued. By evening temp was 100.4 so the on-call NIH doctor told him to go to the ER. They ran labs, ekg, scan – could find no infection or reason for the fever, so they sent him home at 3am.
– on Sunday, he still had the fever and fatigue – and then a rash developed! It was maculopapular, all over his chest and back and his face was red, and then appeared on his legs and arms by the next day. It does not itch. The NIH told him to use a corticosteroid cream.
By today (8/15), temp is normal for the past 15 hours and the rash seems to be slooowly fading a bit.
We did a biopsy and it came back as “Superficial perivascular lymphcytic rash (no vasculitis, no interface dermatitis, and paucity of eosinophils.)”
I assume it’s the classic immunotherapy rash I have read about. But if it was an immune-mediated reaction, would that mean eosinophils should have been found?
I hope it means the immunotherapy is working!
I’m concerned about the low fever for several days and extreme fatigue. (I’m also concerned that a potentially immune-mediated reaction this early could mean more immunotherapy adverse affects later on?)
If anyone has any experience or info to share, would be so grateful. Thank you!
My warmest wishes to all,
LiliJune 18, 2018 at 4:18 pm #97155positivityParticipant
Sorry if I don’t answer the clinical trials question as that is personal choice and one cannot direct you to have your father participate or not. I do remember from the experience with my mom she was ineligible due to high bilirubin levels and she used stents for a year. They are strict with clinical trials and what was surprising it seemed the patient had to be doing well to be eligible when I thought it was for patients who are not doing well and progressing. I could not make sense out of some eligibility criteria and as shown in my posts she didn’t get treatment. Curious to know why the oncologist suggested to replace the plastic with metal stents.
All the best for your father.June 18, 2018 at 11:47 am #97154
I hope the appointment at MSK goes well.
Here is an American Cancer Society link on choosing a clinical trial, for readers looking into this topic. The clinicaltrials.gov website has a similar page. https://www.cancer.org/treatment/treatments-and-side-effects/clinical-trials/what-you-need-to-know/picking-a-clinical-trial.html
Information on the results of an on-going trial is often not publicly available. If a trial is Phase 2 or 3, then there may be published reports on the results from earlier phases. Sometimes early results are described in company reports related to its investors. If you search the name of the drug, the name of the company and what is being treated (e.g., cholangiocarcinoma or solid tumors), you can sometimes find this sort of report. Medical professionals may have some anecdotal knowledge of how trials are going, if they have contact with enrolled patients or the researchers.
Early numbers may not be all that helpful. If the trial has just a few patients enrolled, or if it is early in the study time-line, then information would extremely preliminary and not likely very revealing. As with any treatment, there is regretfully no sure way to know in advance if a specific patient will have a positive response.
What you have been working on is a good approach – namely compiling a list of possible studies, speaking to the researchers listed as points of contact, and consulting with your father’s doctors. In considering which trials may be promising in your father’s case, you can look at what is known about response rates and the severity of side effects (for early phase trials, the information may be very preliminary or even not yet available). Other factors are important as well, such as whether the trial is close to home, how demanding is the trial (e.g., how frequently will the patient have to report to the trial site, what testing is required and how invasive is it), and how much financial cost will there be.
While a doctor might encourage involvement at a trial at the same institution, this may simply reflect a higher degree of comfort with the institution and researchers that are better known. If other trials look more interesting to you, your father’s doctor should be able to give an opinion on whether a trial is a good option, and hopefully could guide you on how to pursue enrollment in any appropriate trials you and your father feel strongly about.
Let us know how it goes at MSK – best wishes that your father’s doctors will have a good treatment plan for him.
Regards, MaryJune 17, 2018 at 10:08 pm #97153
Does anyone have any thoughts for 3rd line treatment?
My dad was on Gem/Cis for 11 months, then Folfiri for 2.5 months until a scan showed growth and he needed an ERCP to place plastic bile duct stents (they said in 12 weeks they’d do another ERCP and could replace them with metal stents.)
It’s been 9 days since the ERCP and he’s mostly recovered, although he is so fatigued – even though his last chemo was May 8 – not sure whether it’s from all the chemo he’s done, from ERCP recovery, or from the cancer itself? Just a month ago he did a 15 mile bike ride, and right now all he feels up for is a 10 min walk or so.
We have an appointment at MSK June 18 (tomorrow!) to find out what they think we should do next. I’m so scared. I don’t even know how to prepare for this appointment or what to ask. I am worried they will just say to do a 3rd harsh chemo regimen that has no data of benefit and will just weaken him further. But what if it’s better than doing nothing? What chemos are left – is it ever good to use oxaliplatin after progressing on cisplatin? Or capecitabine after progressing on 5fu? Is there any point in using abraxane? What about avastin?
I have been making note of every trial on clinicaltrials.gov that he might be eligible for, but none of them sound promising without the mutations/immunotherapy indicators? (I was looking into Dr. Rosenberg’s TIL trial at the NIH but the trial contact said a biliary stent makes patients ineligible? Has anyone else heard of this or gotten a stent removed to participate?)
How do you find out if a trial is promising (when there are no obvious signs like targetable mutations or MSI/TMB)?
Is there a site or something to find out trial results or updates that aren’t posted on clinicaltrials.gov? I can’t find data on most of the biliary trials…
Should I trust the MSK oncologist to tell us which trial looks best from a list I’ll bring, or would they only recommend the trials at their own institution?
Thank you so much, with my warmest wishes to all
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