Topic: More stent troubles

I had an external stent placed on Tuesday March 10 after the first attempt at an internal stent failed two weeks earlier.  My liver was completely obstructed for several weeks before the external stent procedure.  They said it was backed up and under so much pressure that they had quite a time controlling the drainage while they were placing it,

They scheduled a liver resection for March 19 believing that the bilirubon levels would be down to an acceptable 5-7 total bili by then.

Well, today is March 16 and I had a blood draw down and the numbers are beginning to go up instead of down and my total bili is at 13.  It looks like we'll be postponing the surgery yet again.

Meanwhile I am quite concerned.  Why are the numbers going up instead of down?  Does that mean the stent is not working?  I am getting between 350-400ccs of fluid in my bag each day.

The fluid is a dark yellow rather than dark green, if that means anything to anyone.

I am worried that I suffered too much liver damage from the prolonged congestion and that my liver is simply not recovering enough to properly process the bilirubin.  I worry that if my liver is damaged that much than surgery is no longer an option.

I also worry that this tumor will continue to grow and possibly begin to inhabit lymph nodes, etc while I am waiting so long for the surgery and at some point it will be declared unresectable.

Does anyone have experience with stent failures and operable livers being declared inoperable?

O my Father, if it be possible, let this cup pass from me; nevertheless not my will but thine be done.  Matt 26:39

Re: More stent troubles

I am so sorry for your problems. It must be so frustrating and frightening. I dont hve any insight, but wanted you to know that I was thinking of you.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: More stent troubles

Hi Rose, I too am so sorry for all the problems. When my Dad had the bag attached to his biliary cath for awhile, it filled very irregularly (sometimes going a while day without coming out - and then pouring out the next day).  His fluid too was dark yellow, and they indicated it was fine. They even cultured it at times. 

-Tess

Re: More stent troubles

Rose May,

I am so sorry for all the delays & frustrations that you are experiencing.  I don't know the answer either, but am hoping for the best for you and just wanted you to know that I am thinking of you.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: More stent troubles

Dear Rose May,
I am so sorry to hear of the trouble you are having. 
There have been a few of us who have had exploratory surgery, only to find out that the tumor was not resectable.  It's a real let-down.  I hope they can get your numbers down so you can have a successful resection.  The external bag is a pain, isn't it?  I hope that it is real temporary and you can get better soon.
Take care,
Lisa

Re: More stent troubles

Hi Rose,
My husband has an external stent and three internals - two days ago he crained 1200 cc's. The reason he has three to allow drainage etc. He also had an infection. I don't know why your bilirubin is up, what did the doctors say? It's normal for the stents to stop working (my husband's first stent lasted 4 weeks, the 2nd one lasted a week, these ones put in yesterday so we'll see). My point is, stent difficulty is normal and is not always a sign of the tumour's growth. My husband's CC is not resectable. He is hopefully going to go on the liver transplant list.

My thoughts are with you.

Danielle

Re: More stent troubles

RoseMay,
   When my husband had his first drain put in when diagnosed the Docs told us his bili would probably not go below 5 or so. We convinced him to drink lots of water(we got smart water with electrolytes) and kept him drinking!! His bili went down to almost normal in about a week before his attempted surgery. The docs were really surprised but we just flushed the poisons out of him. I still push water and fluids all the time to make sure his stent stays clear when he has one. Right now he is stentless but I still think it's really important to drink lots and lots of water!! Good luck, Mary

Re: More stent troubles

I guess it's back to the hospital tomorrow to have the stent adjusted, procedure #3.  The surgery is pushed to March 25 and hopefully this stent will do the trick.  What an ordeal!!!!! 
It's so hard to keep stayong hopeful but what choice do I have?
All this and the surgery could be aborted if they discover anything they weren't expecting to see, like cancerous tissue that didn't show up on the MRIs or lymph node involvement. 
Thanks so much for all the support and love here on this board, it's a real lifesaver.  Most people simply have no idea.......

O my Father, if it be possible, let this cup pass from me; nevertheless not my will but thine be done.  Matt 26:39

Re: More stent troubles

Rose May, one thing you can count on is that we are all behind you 100% every step of the way!

10 (edited by Darla Tue, 17 Mar 2009 19:11:32)

Re: More stent troubles

Rose May,

You are so right.  Most people have no idea of what we have all been through, but all of us here know & are behind you all the way.

It just goes on & on, but you need to have hope & to stay strong.

I am thinking of you & your family & hoping for the best.

Love,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: More stent troubles

Rose May....Thinking of you tomorrow and good luck for a quick stent re-adjustment.

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: More stent troubles

Rose May

I just can't imagine how frustrating this must be for you.  Hopefully they'll get this resolved tomorrow, and you can go ahead with the surgery on the 25th.  It must be so difficult having the surgery continually postponed.

I understand your fear about the surgery and not being able to have the resection if anything else is found.  My surgery was 10 months ago and I remember that fear so well.  They were able to do my resection with wide negative margins, multiple biopsies were done and they all were negative. 

I know it's a long hard fight for you just to get ready to have the surgery.  But, please keep your hope and your faith and your strength.  We're all behind you through all of this.

Just tell them they have till the 25th to have you ready for the surgery, so they'd better get to work!  That reminds me of my last words to my surgeon in the operating room before my surgery.  I just said to him that "It's your job today to cure me"and he said he'd do his very best to do that.  It seems funny looking back, but I needed somehow to clearly convey that to him!

I'll be thinking of you tomorrow and hoping and praying for the very best.

Jean

Re: More stent troubles

Rose may-what an ordeal!you poor thing,I m really crossing my fingers for that surgery to go to plan thinking of you and kind regards   Janet

Re: More stent troubles

I'm sorry for your stent failure.  MY dad got a stent put in on jan 30th 2008 that failed and his bili count continued to rise.  He went in to get the external and his liver failed so it was too late.  He was diagnosed on Jan 29th and died feb 13th.  I hope there is something they can do for you-I know what you and your family are going through.  Keep fighting and try to keep your head up

Re: More stent troubles

Well I went in Tuesday for a biliary drainage tube replacement.  They put in a larger diameter and also shoved it further up into my liver to drain more bile.

Talk about painful!  I think coming off the sedatives was the worst pain I've felt yet since this whole ordeal started, like a horse standing on the tube insertion site.  Thank god for demerol and quick relief in the IV.

I have not been able to sit up and type since then but today I am improved enough.

Had blood draw done today and have come down two points on the total bilirubin.  I am now at 11 and need to get to 7 for liver ressection surgery on Wednesday.

I am actually eating a little better which is really hopeful as I pretty much gave up on eating with the last tube.  I lost a few more pounds, though, up to 20 pounds lost now which is bothersome, I didn't have that much to spare in the first place. 


I think to myself what a horrible ordeal this is already and I haven't even had major surgery yet, and then I read all these other stories and see that this is nothing out of the ordinary for this kind of cancer and so many have been through much worse with infections, ascites, and other health problems complicating everything.

I am with EVERYONE on this board in solidarity and pray for strength and mercy.

O my Father, if it be possible, let this cup pass from me; nevertheless not my will but thine be done.  Matt 26:39

Re: More stent troubles

Go Rose May!!!
I know you are in pain and it must be frustrating, BUT those numbers are coming down. We like that! I pray they continue and surgery will go through on Wednesday. Success.  If it works, it will be worth it.

Take care and let your body rest.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: More stent troubles

Hi Rose   so your back on track again.I hope you had kind people looking after you when you had that stent done yet again!Im thinking of you on the other side of the world and wishing you better times   
   kind regards  Janet

18 (edited by lackney Fri, 27 Mar 2009 09:19:22)

Re: More stent troubles

I've got a biliary tube/external drain as well and have had similar experiences (although I had a resection before all the jaundice started happening so I'm of course a different case - we're all so special aren't we ; )). Its all mechanics of getting fluid through the little holes in the tube and out. In Jan, after my first replacement, I got no drainage and started itching. Feb tube change brought relief as the docs literally cut bigger holes and repositioned it and all was well (other than all the microscopic biliary ducts deep in the liver that all show strictures - and thus keep my bilirubin counts up around 10 from a high of 16. The stent (which goes from small intestine to external bag) can only get so much bile out. So stents are only so effective.

Have they discussed an internal metal stent? These things are wild. They slowly expand inside of you and create quite a reservoir for bile to flow. For the CC patient, they are more permanent (change every 6 months) and don't clog as easily. I wonder if that is an option you might explore with your docs?  (I'm lobbying my doc for it so I can swim this summer and sit in hot tubs again.)

I can say that in distinction from some other posts, we adapt psychologically, and having the bag and doing the monthly change outs is "no big deal". It is kind of weird how you can get used to something quite alien to most folks, but there it is. I think its a coping mechanism we have the just kicks in when needed.

Re: More stent troubles

lackney....Is this a newly developed metal stent?  The one's used previously were inserted permanently and had to be cleaned out (periodically) with a rotary type devise.  The reason for many people choosing to stay with plastic was related to the fact, that a contemplated resection down the road was not possible due to tissue growth invading the metal stent. 
In my husband's case although, the surgon being reluctant at first, did however decide to go ahead with surgery and he was pleasantly surprised by the easy removal of the metal stent.  In his opinion: this was the exception, not the rule.

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: More stent troubles

Rose may,
I am sorry to hear the problems you have been having but it seems you are back on track. We will be praying for you and a successful outcome.