Endoscopic versus percutaneous biliary drainage in patients with resectable peri
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September 21, 2018 at 5:43 pm #97551lilitmSpectator
Thank you dear Positivity – our pain as caretakers is unique and universal at the same time…
I do wonder about the timing of stent exchanges (my dad’s first plastic stent was placed June 8th, and even though it was working perfectly 3 months later, they scheduled to change it – I guess as a preventative measure to avoid clogging and infection, but perhaps we could wait a little longer next time? Since he gets weekly blood draws for his trial – if bili goes up a little, then we change it? Or is it better to change it before any sign of problem?)
Like you said, there’s no way around it – if they need a stent, they need it… our GI is an ERCP expert and the first stent placement went perfectly, but unfortunately this 2nd one was harder since they first tried for covered metal and could not fit it due to strictures… it took over 2 hours instead of the 20 min they told us the procedure would take. The next day he had pain, nausea, and fever – it really knocked him out but labs did not show high lipase or amylase so maybe it was a very mild case of pancreatitis. It got better and a week and a half later he had more energy again, but oof – it was a rough one. He even thinks next time instead of doing outpatient, he should stay in the hospital that night in case he has more pain and fever.
My big concern is what you mention about stents / repeat ERCPS causing more inflammation and scar tissue… I am so scared of what you said, that after 7-8 times she could no longer have stents. I wonder how long it’s truly possible to have repeat ERCP’s for and still be able to have stents…
I am so sorry she has to have external drains. How is she doing these days?
I have heard that MD Anderson prefers plastic stents, but I think you are right that none of these are truly permanent solutions. I wonder how long uncovered metal stents are supposed to last for without getting clogged… I wanted to find out about biliary bypass (so you don’t need a stent) but nobody would answer me about this procedure, and I figured the fact that it’s more of an involved procedure maybe means it’s not worth it? I mean, I don’t even know who would even consider doing this for us or whether it’s a good idea.
All my warmest wishes to you and your mom, and strength to keep going too
September 18, 2018 at 3:30 pm #97528positivitySpectatorHello Lili,
I understand what you are going through as a caretaker. I don’t want to sound redundant as I have shared about stents in my posts. That posed as such a challenge and overwhelm for me, but there was no way around it. It was necessary in my mom’s case, even if at times it was questionable that she needed the plastic stent exchanges so often. I even questioned, if she needed it from the beginning, meaning when diagnosed and it was placed right away. I was not knowledgeable about CC at that time. First procedure caused complications like pancreatitis, that is why I stress everyone to find a competent GI doctor who is an expert in ERCPs. About 7-8 plastic stent exchanges later and the tumor infiltrating ducts, stents were no longer possible and now its an external biliary drain. I wondered if stents cause more inflammation and scar tissue, therefore making the condition worse, then coming to the conclusion as it was developed for temporary use as medical doctors or scientists creating them for patients who don’t have a long lifespan. I also went back and forth with the plastic v metal. Eventually in my mom’s condition it was determined that the metal will get clogged also and will be hard to remove. In one respect it helping someone’s symptoms to live longer, but it does come with its possible complications and challenges.
Keep going and doing the best to help your dad.
September 17, 2018 at 7:04 am #97516lilitmSpectatorThank you Mary!
I wanted to update that our GI had decided on a coated metal stent (which he said should last about 10 months and could be removed/replaced) – but during the ERCP, he found scar tissue/strictures that made it too hard to fit the larger covered metal stent, so after trying for 2 hours, he had to use plastic ones instead. I don’t know what caused the scar tissue/strictures (perhaps trauma from the first ERCP? But it was only one procedure…) but the GI said scar tissue doesn’t tend to go away so he thinks my dad will only ever be able to have plastic stents.
It sounds like uncovered metal was lowest on his list. (He said a problem with uncovered metal stents is that they can try to “rotoscope” clean them when they eventually get clogged, but that if there was an issue, they would have to resort to external biliary drains.)
My dad was told about the problem upon waking up from the twilight anesthesia, and he was so discouraged and depressed by this news that he will have to undergo ERCP’s every 3 months. The procedure really doesn’t feel like a piece of cake – especially this time, because he woke up the next day with some potential pancreatitis (a lot of pain and nausea, and a fever.) Nobody advised us properly on what to do besides hydrate (which was hard for him – he mostly slept that day), and thankfully the fever came down but the next day I insisted on taking my dad in for labs and IV hydration, and the IV hydration really helped.
Now thankfully he is more recovered and even did a short swim yesterday. He is so resilient, it amazes me… we go to the NIH this week for his 4th immunotherapy infusion, and next month he’ll have his 2nd scan. Wishing and hoping for good.
LiliAugust 26, 2018 at 4:27 pm #97424bglassModeratorHi Lili,
To my knowledge, we have had just one case report on the board of someone with a stent who no longer needed it after treatment. The board member was Kris who posted under Kris00j – she was a long term (about seven years) survivor even though she was not able to have surgery. She participated in several clinical trials with good responses, but sadly, passed last year.
At the bottom is a link to the chain where Kris reports no longer needing the stent. The post is dated November 26, 2016.
So this is something that can happen with luck for persons under treatment, but it does not seem to be super common. Another question to ask your doctors.
Regards, Mary
August 26, 2018 at 2:40 pm #97423lilitmSpectatorThanks so much Mary ~
Exactly – you put it so well.
I tried reading everything I could find on biliary stents, plastic vs metal, uncovered vs covered metal… and even endoscopic biliary bypass, which I thought might be a way to solve the problem with a little harder recovery up front but less problems down the line…
But I could not find out how long SEMS (either the covered or uncovered metal stents) are supposed to work for, or whether there is any way to remove them if the patient becomes NED.
All I could find was similar to the example you shared, which states: “2. If expected survival is >4 months, SEMS is more cost-effective.”
Like you said, that doesn’t capture the details of a specific patient’s situation, nor does it address our real concerns. It only tells us which is more cost-effective for the medical industry!
Re: the comment from the article that says: “if there is no definitive management decision, plastic stenting is indicated.”
This is basically the reason we would consider a plastic one again – maybe hold off a few months and give the immunotherapy trial a chance to work?
It’s just so hard to know whether making decisions from a hopeful place like that is ok… on the other hand, it seems the doctors will take the opposite approach and make decisions from an assuming-the-worst place…
Since the realities of stage 4 can be so harsh (and the doctors so dismissive), I don’t really know how to effectively communicate any concerns related to optimistic outcomes.
For example:
My dad had the same tumor around the bile ducts upon diagnosis March 2017. For over a year, he did not require a stent. However, when there was a little growth in May 2018, he started getting elevated bilirubin and itching – so he needed a stent for the first time.
Once the stent was placed, it worked perfectly and the symptoms cleared up. Then he began the immunotherapy trial. The first scan shows stable disease.
If he were to see any shrinkage in the coming months, even if the tumor around the bile ducts just shrank a little, to where it used to be, then he could conceivably go back to not needing a stent?
About asking the doctors – my dad has an appointment this week with the local GI who performed the last ERCP (he seems kind but is not a biliary oncologist – he just knows how to place stents very well.) I will prepare questions for him. I will reach out to an interventional radiologist for their input as well.
When I called the research nurse for the TIL trial, she said any stent would make him ineligible because of infection risk – and it takes a couple months to prepare the TILs from the tumor sample. So things would have to be ok for a while without a stent for this trial to be an option – perhaps a stretch, although perhaps possible. Then again, it would be so hard to close the doors on this trial by taking a permanent stent.
Hopefully our current trial works and whatever stent choice is made is for the best…
August 24, 2018 at 10:33 pm #97408bglassModeratorHi Lili,
Stent questions are best directed to doctors, but as you indicate, sometimes regretfully it is difficult to get their attention with a patient’s concerns. There are a ton of medical journal articles on plastic vs. metal stents, and also on covered vs. uncovered metal stents for biliary strictures, which you have probably already seen. I will attach an example below. The general finding in many of the studies is that metal stents are preferred if the patient’s life expectancy is longer than 3-4 months, although each study has its own perspective. The trouble is that averages reported in studies may not capture all the details of a specific patient’s situation.
I hope with persistence you and your father can find one of his medical providers who can walk through the decision taking into account your and his concerns such as eligibility for future trials. It is really appalling that they are dodging your questions. Have you spoken to the doctor who will actually perform the stent replacement next month? You might contact one of the researchers on the TIL trial to check more thoroughly about the likelihood he may be eligible and how stenting factors in. There will be contact information on the clinicaltrials.gov entries for any trials you may be looking at.
I hope you can find the answers needed. Please let us know how this turns out.
Regards, Mary
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4821525/
There is a comment in Table 1 in this article that “if there is no definitive management decision, plastic stenting is indicated.” This is a bit vague but might mean if treatments are not yet fully planned out, then the shorter-term plastic stents would be considered. It would require a doctor’s judgment whether this would be applicable for your father.
August 24, 2018 at 8:02 pm #97407lilitmSpectatorThank you both ~ I am not sure what to do about plastic vs metal stent in our situation, and I can’t seem to find much on biliary bypass.
My dad was diagnosed March 2017 but did not need a biliary stent until June 2018. They placed a plastic one and it worked perfectly. He then began an immunotherapy plus ablation trial on June 25 at the NIH.
On Sep 4, he’s scheduled for another ERCP to replace the plastic stent.
I’m afraid if they use a metal stent, we are asking for problems down the road (if we are lucky to make it down the road – but we are still hopeful about this trial we just started. He is feeling better the further away from chemo he gets (last Folfiri was May 8th) and recovered well from the trial radiofrequency ablation. He is tolerating the immunotherapy drugs well, got a short fever and rash which could be a good sign of efficacy, and his first scan Aug 21 was stable.)
I have heard that metal stents aren’t really designed to be in the body for more than a year or so – but they are not removable. So what happens if you survive past that? I have read of others having mangled metal stents (not sure if theirs were in the same location – ours would be the bile ducts.)
I don’t know how long the metal stent might last before being occluded, but apparently once that happens, you need ERCPs again every 3 months to place plastic stents inside the metal? So does it just delay the inevitable regular ERCPs? For how long?
If we get a plastic stent, then we are guaranteed to make him go through another ERCP in 3 months. I’m concerned that’s a lot to go through, especially when we don’t know what he’ll feel like in 3 months.
I don’t know if we can trust our doctors on this – I feel like if they say to get metal, are they just assuming my dad won’t survive long enough for the metal stent to become a problem? But what if immunotherapy works for him – then are we just guaranteeing future unsolvable problems with the metal stent?
Also stents make you ineligible for the Rosenberg TIL trial… I was holding hope that we could do that trial if his tumor near the ducts shrank enough for him not to need a stent again (like the past year.)
I read that MD Anderson prefers plastic stents – especially because metal stents become a permanent risk for infection… but our trial doctor just shrugged and said to ask the GI, but he doesn’t think metal stents cause a lot of problems and they work better. (But isn’t he just thinking short-term, and what’s best for his trial?) Our GI said to ask the oncologist. Our local oncologist said to ask the trial doctor or GI. Our MSK oncologist does not care at all (ever since my dad couldn’t do more chemo, they were totally uninterested in helping us.)
I don’t even know who to ask about the options – and what about biliary bypass? If that could be done endoscopically, perhaps it’s more invasive than an ERCP to place a stent but worth the harder upfront recovery to avoid these recurring stent issues?
Thank you and my best wishes to all here.
August 22, 2018 at 10:24 am #97399gavinModeratorHi Mary,
Thanks for all of that and I agree with all that you say and yes as you say, there are no easy answers to anything to do with CC. I so wish that there were though! And yes, you are so right in what you say re doctors etc and how they should be highly experienced in dealing with patients with CC.
My dad got the metal stent as for him surgery was ruled out from diagnosis and his team thought the metal one would be best for him in that situation and my dad was also wanting the best quality of life for the time that he had left. Not wanting the plastic one with clogging issues etc every few months, hosp visits to get it changed and all that that brings.
Thanks loads for the link as well Mary, much appreciated as always!
Gavin
August 21, 2018 at 10:43 am #97392bglassModeratorGavin,
Thank you for posting this important research. This topic has inspired many studies – it is good to see there was a randomized trial done to shed more light on this choice.
We periodically see questions about stents on the board. My own view is management of biliary drainage is highly complex, and there are no easy laymen answers to questions such as whether plastic or metal stents are better. Answers must consider a lot of patient details such as the location of the blockage, the patient’s general condition, what other treatment is planned, among others – and are best addressed by medical experts. That said, we all benefit from good background information on this topic. For those who have faced stent decisions, please post your stories – they are so helpful for others.
The article Gavin provided compares the use of stents (introduced endoscopically – through the mouth and esophagus into the bile duct blockage to open it up and keep it open) to use of catheters passed through the skin into the liver/blocked bile duct (which may drain into a collection bag and/or the small intestine) to bring down high bilirubin levels prior to resection surgery. This decision is taken after first examining another consideration, namely, is ANY pre-operative drainage necessary? Or should the patient simply be rushed into surgery? I will add an example of a medical citation at the bottom that discusses this choice.
So, repeating myself here, there are two questions to think about in sequence. The first question the doctor will consider for a resectable patient presenting with bile duct blockage, jaundice and/or high bilirubin is whether surgery should be immediately scheduled or whether drainage is needed before resection to ensure the surgery can be done more safely with fewer complications. The second question if drainage is indicated is what form of drainage. There are no easy answers to any of this, so be sure you have experienced doctors involved, ask a lot of questions, and if you have doubts, consider seeking a second opinion.
Regards, Mary
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2504392/
August 21, 2018 at 9:59 am #97391gavinModeratorEndoscopic versus percutaneous biliary drainage in patients with resectable perihilar cholangiocarcinoma: a multicentre, randomised controlled trial.
https://www.ncbi.nlm.nih.gov/pubmed/30122355
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