Liver enzyme levels jumping up?
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Thank you so much Mary.
Today he seems to be a little better – hopefully he keeps recovering from the ERCP with a little more time as you said. It’s hard to know he’ll have to have another in 10-12 weeks or so. Especially since we don’t even know what treatment he’ll be on by then.
It’s so hard to guess whether another chemo option would be worth the toxicity and even get us more time. Has anyone done a chemo regimen besides Gem/Cis and Folfiri? (Besides another platinum drug?)
Can I trust the oncologist at MSK to tell us honestly whether any of these treatments are worth pursuing, or if he’d have more quality time if he didn’t do them?I have been making note of every trial on clinicaltrials.gov that he might be eligible for, and called some and sent scans to see what might be possible… but none of them sound promising? (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 immunotherapy markers)?
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? Can you trust trial investigators to honestly tell you if you should try their trial versus best supportive care, or do they just want as many eligible trial participants as possible, to learn from them?
Where do you think is worth to go for another opinion? We see Dr. Abou-Alfa at MSK – is there another biliary specialist you recommend? I’ve read about Dr. Javle at MD Anderson…
Thank you for the gentle introduction to this terrifying topic – I hadn’t even thought of researching hospice care. Maybe if best supportive care ends up being his best option, then that will help him live longer and better… right now even though I am filled with fear and desperation, I still have hope that somehow things will become better. I have no idea what it will look like if there’s no hope.
Thank you again <3
Hi Lili,
I am sorry to hear your father is feeling poorly after his recent ERCP. Hopefully with a little more time for recovery, he will feel better.
From what you describe, it seems your father is facing another turning point regarding treatment choices. There may be other chemo options. If a clinical trial is a possibility, it may be helpful to look at the available trials posted on clinicaltrials.gov to see if there are any in your area that seem promising. The postings give contact information you could call to ask any questions. If you see clinical trial options of interest, you can ask your oncologist about his views, and he or she may be able to help with finding a spot.
Certainly, seeking a second or third opinion at this juncture would be reasonable if your father is up for that. The general recommendation for cholangiocarcinoma, since it is so rare, however, is to be sure any doctor you see has a lot of experience with it.
I would make another suggestion, even though it is not really needed at this point. You may consider, as research, looking into hospice care in your area. Hospice is hard to think about, to some people – erroneously, in my view – it feels like giving up, but actually it is a treatment option that can improve quality of life for patients at the point when it is needed, and in some cases, hospice care even can extend life. While it may feel distressing to hear a suggestion about looking into hospice care, at some future moment having this information already thought about will be helpful to your father and you. As a patient (being a hyper-organized sort of person), I did this research for myself after I was diagnosed, and surprisingly it gave me some peace of mind.
I hope a new treatment plan comes together without too much stress for your father. Please keep us posted.
Regards, Mary
Latest update:
My dad’s itchiness got worse during his skipped cycle so I pressed for more bloodwork and an earlier scan. His billirubin was now rising and thank goodness they did the CT scan sooner because it showed growth and early biliary stricture.
So he was scheduled for his first ERCP. I was scared but the GI seemed very experienced with them and said he does plastic stents first, then potentially metal the next time. My dad underwent the ERCP on June 8th and the doctor said it went smoothly. Even though they discharged my dad right after, I’m scared whether he will recover fully. He has had chemo for the past year so it’s not like he is at his strongest. The day after the procedure (yesterday), he could still barely walk around and felt so tired and nauseous, and sore in the spot of the procedure (they also had to cut the opening of the duct a little to get the plastic stent in, according to the notes). He just stared sadly past us and ate a little soup and bread (he’s supposed to be on a low-fat diet now for this, which I’m concerned about how to keep him from losing more weight.) How long does it take to feel good again after an ERCP like this?
Also I am so scared because the scan results of growth mean that Folfiri wasn’t working (that’s what the local oncologist said, even though my dad had been on a chemo-pause for 4 weeks.) The Miami oncologist also didn’t give us any real treatment suggestions, just mentioned phase 1 trials and the likely-inefficient immunotherapy option and then sent my dad for the procedure.
I asked MSK if our oncologist there can weigh in but they want my dad to travel there in person again. He traveled there for every other scan except this one. I mailed them this scan cd so I wish the oncologist would do a video chat or phone call with us so my poor dad doesn’t have to travel all the way there just to hear the treatment suggestion. If there even is one?! I can’t even imagine what a good option would be – he’s progressed on Gem/Cis, now on Folfiri, and has no targetable mutations or immunotherapy indicators.
He was never tested for pd-L1 so I asked the doctor to sign the form requesting it from Foundation One (we have old tumor tissue that can be mailed to them from my dad’s original gallbladder removal) but the doctor mistakenly said that we already tried that and there wasn’t enough tissue to test for pd-L1. (He is incorrect – when we originally sent for genomic testing, it was with a different doctor who didn’t order pd-L1, which has to be ordered separately. I talked to the pathologist and there is enough tissue to send for this test.) I wrote back explaining but he has not replied.
I don’t know if my dad will be ok to travel to MSK in 1 week. I don’t know if they will have anything good to suggest. I don’t know what to do…
I am even thinking of trying to get my dad to see an alternative oncologist I found, Dr. Mark Rosenberg in Boca Raton? Anyone heard of him or has any experience? Although I’m scared if we can trust any slightly out-of-the-box doctor – what if they are trying to profit off our vulnerability? I’m also scared to trust MSK who doesn’t claim to have anything better than the standard tools, and their toolbox is very tiny for stage 4 biliary cancers. I don’t know…
How can we make the best guess about which treatment (or no treatment?) would give my dad the most time and quality life possible?
Thank you so much. Love to all.
Thanks again everyone ~ I wanted to update you:
My dad was supposed to get Folfiri chemo #7 yesterday, but the night before he said he just doesn’t feel recovered enough to get hammered by another cycle of chemo again. So he got approved to skip this cycle.
I wrote to both MSK and Miami Cancer Institute asking: If the current dose and/or schedule of Folfiri is taking away the majority of his “good week” and his energy to be active, how can we balance quality of life and still not sacrifice effective treatment to prolong his life?
The Miami oncologist replied: “For now I would like to keep the chemo on hold not only because of his symptoms but also because his liver enzymes have been rising and I am assuming it is related to the chemotherapy he is receiving. Before we restart chemo at the same dose or reduced doses I would like to make sure that his liver functions tests are improving or at least stable.”
I wonder whether low-dose chemo would be a better option – give him more quality of life and still treat the cancer, especially since he’s inoperable… what’s the point of pounding him down with harsh chemo when it’s not going to lead to a surgery or anything? Are we cutting down his survival time by lowering the dose? Is it better to do no chemo in that case, and just prioritize quality? (Emotionally I can’t even deal with the thought of giving up somehow…) But how much quality could we get if there’s nothing holding the cancer growth at bay? I read that dosages are established by maximum tolerated dose in clinical trials, not minimum effective dose. I tried researching efficacy of low dose chemo and it seems it may be as effective? I’m not sure what to think… as always. Until the past couple cycles, he would recover enough energy by his off-week to exercise pretty much daily. I feel like that has contributed to him doing better than expected…
Love to all
The itchiness can also be from the alk phosp rising- something to check and see if it coincides with a further rise in the other liver enzymes. Does your dad see a gastroenterologist in addition to his oncologists? While they will most likely defer to oncologist (since the cancer is likely causing the liver/GI issues) they may be able to add in an opinion, and are probably easier to get an appointment in without flying to NYC. Try to find one that specializes in liver GI.
Thank you so much Mary, Billy, and Positivity ~ your responses are deeply appreciated.
His blood tests are every 2 weeks, before chemo. (Folfiri is one week on, one week off.) About a biliary obstruction – as per his last scan a month ago, he didn’t have one. He also doesn’t have a stent. Is there another way to check for this besides a ct scan? Our next scan is in mid-July…
I guess we have to rely on the oncologist to know at what point the results are so concerning as to warrant a change, as Mary said… If only I could trust that they would be quick to respond to a real issue! I worry they are too dismissive and let it get worse before checking on things.
In the meantime, I wonder if these symptoms are important for the big picture:
– My dad has been itchy the past couple days. (His bilirubin is normal and his eyes aren’t yellow or anything…)
– He just started taking Zofran in the evenings when his nausea is at its worst. Until the past few days, he hadn’t taken any nausea meds besides the IV aloxi/steroids he gets during chemo, for the entire time he’s been on chemo (a little over a year now). (He’s allergic to the IV Emend so he was afraid to take the pill form, he is on an SSRI antidepressant so he was afraid to take too much Zofran, and also didn’t want to deal with constipation etc so he was hoping he could keep managing the nausea naturally with ginger and cbd oil, which worked until now.) He took maybe 4 Zofran total in the past few days.
He thinks maybe the Zofran made him itchy, but I’m not sure if that’s a side effect.
– So he didn’t take one last night. And last night for the first time, he was throwing up. Afterwards, he decided to try a Marinol. It might have helped and it gave him some appetite later, but he said he felt a bit woozy. So today he took another Zofran.
Any thoughts or experience with managing nausea? With itchiness but normal billirubin?
Since my dad travels from Miami to Memorial Sloan Kettering every 2.5 months for his scans and for the doctor to call the shots, I was hoping the doctor there could weigh in on his labs. However, they wrote back that since they haven’t seen my dad in person this week, they can’t comment. They told us to ask our local oncologist, but he doesn’t have much experience with biliary cancers. So I think that always leaves me nervous… I wish MSK would be more helpful – I mean, they make me feel that if my dad doesn’t feel well enough to fly to MSK one day, his doctor will just dump him and not care to advise…
Even so, maybe I should ask them the question Mary mentioned – at what point would rising liver enzymes provoke a closer look/change…
I have asked the MSK oncologist “what next” and he said there’s no way to know. I asked the Miami oncologist and he said “maybe a phase-1 trial?” Neither are very reassuring. Without targetable mutations or immunotherapy indicators, I have no idea what a promising next step would be. Any other ideas of the sort of consults to ask for or procedures/therapies to ask about if the next scan shows growth and we have to stop 2nd line chemo Folfiri? Any luck on any other chemo regimens?
Thank you so, so much. My wishes, hopes, and love to all
I want to share when one does not have chemotherapy. The liver enzymes still fluctuated and would get very high when the obstruction increased or the stents would no longer work. They would also rise when person is given a lot of pain medication. Does he use stents to relieve the biliary obstruction?
The rise can be temporary- A rise and subsequent fall may actually happen when the chemo is working (for CA 19-9), as it did for kathy’s chemo regiment. Certain medications including chemo regiments can raise liver enzymes, and when discontinued the enzymes fall back to normal likey indicating a temporary insult to the liver (but this may take awhile). However others may cause more permanent damage. The trends are important, but they are just a small part of the overall picture. To put in in context during kathys chemo her ast fluctuated between normal and high every other week; her alk phosp went from 100- 600, and alt was usually elevated. After the meningitis episode kathy was put on keppra, and all her enzymes skyrocketed (alk phosp close to 1000). She has since stopped the keppra, but was it medicine induced or worsening of her PSC or liver, we dont know as of yet.
Hi Lili,
Blood tests are a mixed blessing. They give a window into how a patient is doing, but often the picture is unclear, and often doctors want to wait and see more evidence beyond a blood test result to take a potentially disruptive action like stopping or changing treatment.
As we all experience with chemo, it is a treatment that deals strongly with our cancer. Doctors monitor blood counts and metabolic panels, and must make careful decisions about when it is time to scale back or stop a treatment. It is very common for blood tests to show abnormal results at times during treatment, and an experienced oncologist should know at what point these results are so concerning as to warrant a change in plan. Adverse blood test results can be temporary, or can clear up during break periods, or can, although out of normal range, still be classed as “mildly” high or low.
That said, your dad is worried and for this reason you may wish to circle back to the oncologist to clarify at what point rising liver enzymes would provoke a recommended change in plan. Chemo regimens tend to work for a while, hopefully a good long while, but then may start losing effectiveness or become less well tolerated. It is always good to be thinking about “what next” so you are a step ahead should the day come when a new treatment must be pursued.
How often are his blood tests repeated? Is the next scan sometime soon? Hopefully you will have additional testing results soon to help clarify how your dad is doing.
Best wishes that the next round of tests gives better news.
Regards, Mary
My dad’s liver enzyme levels were normal until recently. A scan in late Feb showed some small growth on the surface of the liver (and slightly increased peritoneal mets) so he was taken off Gem/Cis, which he had been on for 11 months. His 2nd-line chemo is Folfiri. His liver enzyme levels started going up after the Folfiri treatments. Now between treatment 5 and 6, his numbers shot up from slight elevations to: ALT is now 272, AST is now 141, and Alkaline Phosphate is 193.
I asked the oncologist if we should be alarmed but he just said “More than likely is due to chemotherapy effect, nothing to do with the cancer itself.”
My dad is worried that it means the chemo is damaging his liver. I don’t know whether to trust the oncologist because they always say not to be alarmed, but for example they said the same thing when my dad’s CA 19-9 was rising and just let it rise for 2 months until a scan showed growth.
Does anyone know if the liver enzymes can be elevated but it doesn’t mean liver damage? Any suggestions?
Thank you so much!
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