Percutaneous biliary drain
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Jess….Like you, I would like to know the cause of the problems so that life can go back to normal for you. Being that you have two institutions involved you would want to make sure that the information is transferred amongst the specialists.
I agree, you will know much more when meeting with the hepatologist on Tuesday.
Hugs and tons of good wishes
MarionNo, I have not been diagnosed with PSC nor have I ever had any issues with my liver functions prior to this. The cancer has never caused symptoms and was found incidentally. My liver also tolerated my other chemo regimens well. have had three CT scans and several cholangiograms since my stricture was diagnosed with the ERCP. Do you not think it’s likely that the pump caused these issues? It seems like the most obvious answer to me. It’s a known adverse event and I displayed all of the corresponding symptoms. Now that I think about it, some of my discharge paperwork has listed my issues as something like “secondary to hepatic arterial chemotherapy.”
I imagine I will know the results of the CT scan when I see the hepatologist on Tuesday. That will still seem like forever though! Thank you for your thoughtful responses!
Jess….I have learned that PSC is a risk factor for Cholangiocarcinoma. Had you been diagnosed with it? The study lists it in the Exclusion Criteria: Diagnosis of sclerosing cholangitis.
Brushings more often than not come back negative however; you had a biopsy for accurate definition. Did you know that you can send your tissue to a different institution for a second opinion?
Monday’s CT scan will shed more light on the situation. When will you get the results?
Hugs,
MarionYes, that was the trial I was participating in. I am no longer receiving chemotherapy though.
I suppose whether or not my current bile duct problems are directly related to the pump is a complicated question. No one will say for sure, but one GI doctor at Penn told me that the sclerosing cholangitis was a well known complication and I got the impression that’s part of the reason they fell out of favor (things have gotten better apparently with better dose management and the addition of steroids to control the inflammation). They also did a brushing during my first ERCP for the original stricture stent placement and it came back negative. How the abscess and current problems with my bile ducts are potentially related to thee original stricture and pump isn’t all that clear to me. My very layman’s understanding (and I’m generally pretty darn savvy) is that the stricture caused the bile to back up and kind of create a breeding ground for the bacteria that eventually (a few weeks later) formed the abscess. How the rest of my biliary tree became damaged is more unclear to me. I’m having a triphasic CT on Monday that they are hoping it will give them more information.
Sclerosing cholangitis is listed as a “Rare but Serious” side effect of the FUDR that goes into the pump. I honestly don’t remember if it was specifically discussed. It probably was. I had no idea that could potentially lead to any of the other things I’m going through.
Jess….you have reasons to complain. For most of us, looking healthy (good) translates into feeling good as well. On the other hand though too often are we hypersensitive to what we assume others see in us. As they say: we are our own worst critic.
I am trying to understand, Jess, are the problems with bile ducts directly related to the liver pump? If so, where you made aware of this potential side effect? Are you participating in this Phase II clinical trial?
https://clinicaltrials.gov/ct2/show/NCT01862315
Wishing for a better weekend for you.
Hugs,
MarionI also want to say to anyone who may be reading this and considering the hepatic arterial infusion pump as a treatment option: understand the risks of adverse events very carefully. The biliary stricture was mentioned in the study protocol as a risk and I believe it is very rare these days, but talk to the oncologist and surgeon about what it would mean for you. Throughout my course of treatment I have been called unique, interesting, and even weird because of how my disease and the treatment side effects have presented. Don’t discount the pump because of what you have read about my experience here. Just really talk about it with your doctors and understand the the risks before you make a decision. Push them on it. Sometimes I think they get really excited about their studies and have and have a tendency to gloss over that part.
Thank you for the encouraging words Marion. I have had pretty decent spirits through most of this ordeal (of course some days are better than others), but it’s getting very hard to keep my chin up with all of this going on. I have been fortunate enough that I haven’t looked “sick” through most of this, with the exception of the Vectibix rash. I have lost a decent amount of weight in the last three months (I wasn’t heavy to begin with) and with my skin and eyes being so yellow, it definitely looks like something is wrong. I know that I shouldn’t let my vanity get the best of me, but it’s hard to do. My appearance is important to me and looking good makes me feel good. It’s hard to go to work or out in public and have people looking at me like that. I do realize that so many people have it so much worse, but I think I’m just giving myself a pity party. I’m sure it will pass. The Vectibix rash was really hard, but at least I knew what was causing it and that it would end when I stopped the treatment. I have no idea if/when this will end. I’m trying to minimize it with lavender makeup primer (who knew that lavender would offset yellow?) and wearing my glasses so my eyes aren’t as obvious. It only helps a little.
I also have thoughts of transplant on my mind, but I don’t know if anyone would do it for me. My 57 year old mother shares my blood type, is in excellent health and is a very willing donor (I think in her mind it makes her happy because It’s finally something she can do to help – I can’t imagine the anguish a parent feels in being powerless to help their child). The cut off for a lot of living donor transplant programs seems to be age 55 and my doctors at Penn are still calling it “Adenocarcinoma of Unknown Primary” even though MSKCC calls it ICC. Although either diagnosis may exclude me. The hepatologist I’m seeing on Tuesday is part of the transplant committee, so I would imagine it will come up in conversation.
Thanks for letting me vent. It’s helpful to get it all out. I’m sure my self pity party will end soon enough. As my mom always says “You can go there, but you can’t stay.”
Jess….my goodness – this is really tough. I realize how worried you are about recurrent disease, but remember that at present you are disease free. And, who knows if and when it would recur. If so, then other options should be available to you.
Monday’s CT results should shed more light on the situation and hopefully the infectious disease physician will come up with some viable answers for treatment.
Thinking of you and sending tons of hugs your way,
Marion
What a mess….
The day after I posted this topic, I got a call that my TBILI was 10.3, so they wanted to put the drain in right away because of the holiday weekend and because my IR was about to go on vacation. I went in, they put in the drain in and I stayed until the 4th. My TBILI went up to 11, but they said that may be expected. On the 6th my TBILI was 11.3. Another IR upsized the tube from 16f to 18f and cleaned out debris in my ducts. I was draining crazy amounts of varying colors (brown/orange/green) for several days. On 7/13 my TBILI was 12. On 7/14 my IR told me to cap the drain and then on 7/15 my TBILI was 13.7. The IR told me to put the bag back on, which I will do tonight.
I’m so frustrated because this doesn’t seem to be getting any better. I’m taking Augmentin, which I guess has some propensity to cause liver damage (but I was informed that most antibiotics do). My Infectious Disease doc won’t change me to anything else until my CT scan on Monday confirms that my abscess is gone (the abscess had an anerobic bug, which is treated with the clavulanate potassium part of the Augmentin). If it is, she’ll switch me to just amoxicillin.
My oncologist at MSKCC is also interested in seeing my CT scan results.
I’m seeing a hepatologist on Tuesday. I don’t know what to expect and I don’t know what else they can do. I’m hoping that the Augmentin is the issue and things will get better if I’m off of it, but I doubt I’m that lucky. I’m yellow but aside from being tired, I feel pretty well. I’m only itchy occasionally and the Questran helps that.
To make me even more freaked out… my CEA keeps going up by 0.1 every time it’s drawn. It’s 1.4 now, which I know is very low. This is from when it was <1.0 in the beginning of May (I finished chemo in mid-March). I just don't like the trend. I was at 4.1 when they found my (single 1cm tumor) recurrence last September and was 2.1 when they stopped seeing the tumor on my scans in February. They couldn't see anything in my last scan on 6/8.
I just wanted to tell my story. I’m so frustrated. I feel like I have been through the wringer. It’s been tough for the past two and a half years, but the past 3 months have been absolute hell. The crazy thing is that none of this is from the cancer, it’s all from the treatment. If the cancer comes back after this (which I know it’s likely to do), I will be beyond despondent.
(I’ve edited this for spelling)
Jess….I agree with Lainy, a second opinion (or third) would be helpful. Perhaps another solution can be found and if not so, then you are confirming the current recommendations.
Hugs
MarionDer Jessrose, You have been through the Mill and back and I hope you can get this situation resolved. Absolutely, when in doubt get another opinion. You may be at a wonderful place for treatment but are they knowledgeable in dealing with CC? 2nd opinions Never hurt. I can say from experience that my husband wore an external drain on and off for 5 years and h worked and golfed and everything. I just had a colectomy and I am already good friends with my pouch. IF it will prolong life it is worth the wearing. You really get used to it and sometimes even forget it is there. But, go get that 2nd opinion and see what a 2nd set of eye do for you!
This all happened today, so I haven’t had time to do any research. I’m hoping that you extremely knowledgeable folks can point me in the right direction. I had an HAI pump implanted last November. The good news is that they haven’t seen any tumors on my scans since the end of February. The bad news is that I have had some pretty terrible adverse effects. It started with mild pancreatitis, then a biliary stricture that required stenting. Then in May, I found out that I had a 9.5cm abscess in my liver which had me in the hospital for 8 days (in the MICU for septic shock one of them). I had a drain put in, which I still have. I have had to have the tube changed about 8 times because the abscess was full of necrotic tissue. I went to see my IR today and the good news is that the abscess is gone. The bad news is that my bile ducts are now apparently junk. They are weeping everywhere and not draining properly. My IR is checking with GI to see if they can do anything else with stenting (I had mine replaced last week because it was occluded and I got all jaundiced. I’m still a lovely shade of light oompa loompa). He’s not optimistic though and thinks I’m going to need an internal/external drain for the rest of my life. Hopefully it will be something I can cap and not have to wear a bag (which I obviously hate). Should I be seeking another opinion? I’m at a large university hospital with an excellent reputation. I’m usually pretty on top of what my treatment options are, but I’m at a loss here. Any help would be greatly appreciated!
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