Topic: jaundice

Hi Friends,
Well I haven't posted in a long time although we have a blog under joesinformation.blogspot.com . We have had a fairly smooth ride since Joe was diagnosed in July of 06 but it looks like were are at a major hurdle now.  His only symptom was a queasy stomach.  We opted for no conventional treatment and then last March started IPT treatments.  He had an RFa on one of his three liver tumors which was successful last June.  He has multiple tumors in his lungs.  We have been able to go with our life until now when over the weekend I noticed his eyes were yellow.  You couldn't see it on his skin because he is tan but it does have a yellow tinge.  His urine is also very dark brown which I think means his bilirubin is out of whack.  We are currently in Bonaire in the caribbean or should I say I am.  Joe flew home to Chicago today and will have an MRI and an MRCP Wed. and Thursday.  His doctor was nice enough to take my fax from here and go with my suggestion.  up til now he has only had PET scans but from this website I could see that an MRI gav more specific info on the bile ducts and the liver.  He has intrahepatic and although he has been diagnsed for 19 months, he has had symptoms for 29 months so I know we have been lucky to have such a good journey so far.  I know we are in trouble now and am waiting to hear th results of th tests to fly home.  He had expected to fly back in a week but I think that is unrealistic.  Our main purpose for being her ewas to get out of the Chicago winter weather but our secndary was to scuba dive.  With this jaundice he cannot do this because he needs his liver to detoxify the nitrogen.
So long story shorter, if he needs a stent, can any hospital do it or do you have to go to a big one like northwestern?  We have an oncologist at Northwestern but she has pretty much written us off bcause we went alternative.  We 're working through our internist now and the doctor doing the IPT.  Could you share your experiences with stents and whether he needs a major hospital to have this done.  I am a nurse but when it comes to your own, it is a whole different story.
I am looking into flights home but this is high season.  I look forward toyour suggetions and comments. We pray for all cc patients and know we ar on the far end of the bell curve but we aren't ready to give up yet.  God bless  Mary Anne

2 (edited by marions Tue, 19 Feb 2008 13:45:40)

Re: jaundice

Maryanne,
your wonderful blog is one I have been reading all along.  So sorry to be hearing about Joe.
In our case, when addressing the stent placement, we contacted several gastro. doc's and asked for referrals.  Interestingly, it seemed that most were leading us to one specific physician specializing in this particular area of gastroenterology whom ultimately, we chose for the procedure. 
I would assume  that by calling Northwestern or even your local hospital you most likely will have plenty of physicians to call on.  Also, although your current oncologist may or may not agree with your type of treatment you had chosen for Joe, she may very well be able to connect you with a reputable physician with quite a bit of experience in this area of stent placement.  My standard questions:  How many of these procedures have you performed and have you ever treated anyone with CC?
I am thinking of you and sending my best wishes and tons of hopeful thoughts your way.
Marions

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: jaundice

Mary Anne - so sorry to read your latest post; there is probably not a day that goes by that I don't check your blog.  I can't answer any of your questions regarding stents; Sam had intrahepatic CC and also RFA on the liver tumor but never had any problems with jaundice.  I could tell by Joe's posting that he was really looking forward to the trip to Bonaire; I wish things could be different for all of us.  My thoughts are with him as he travels back to Chicago and also with you as you work things out so you can be with him.  God Bless
Betty Johnson

4 (edited by JeffG Tue, 19 Feb 2008 16:27:18)

Re: jaundice

Maryanne and Joe---Sorry to hear symtoms of juandice popped up.  I'm going to just think positive thoughts and send a few prayers your way. 
God Bless You Both,
JeffG.  P.S. Lucky is a cutie.

Take it to the Limit,One More Time! (Eagles)

5 (edited by Jillie Tue, 19 Feb 2008 20:38:12)

Re: jaundice

Sorry to hear of your setback, especially occurring on vacation away from home.  Coincidentally my DH"s first sign of pancreas ca showed up as a bile duct blockage and high bilirubin while we were far from home as well.  We flew home in great pain and a GI at our smallish community hospital had no problem doing an ERCP and placing a stent.  This provided immediate relief, by the way.    I think most GIs are familiar with this procedure.  It is not major surgery.

Of course the subsequent steps of our journey, getting all of the testing, diagnosis, and chosing a surgeon and oncologist were trickier.  Best wishes to both of you.

Re: jaundice

Strange... my first symptoms popped up when I was on vacation 2000 miles away from home, too.  I thought I had jet lag or a mild case of the flu.

My gastroenterologist at a community hospital places my stents.

Re: jaundice

Joe and Maryanne -
My thoughts and prayers are with you.  Hang in there!  Read your blog faithfully.

Joni Craighead

Re: jaundice

My sister's first symptoms were jaundice and itching and the community hospital GI guy put in a stent. Well, now 5 weeks later, that stent is infected and causing major problems and the cancer center we are in were not very pleased with the job he had done. I think that each case is individual and that if the tumors are large and problematic, you will need an experience IR guy (or gal) to the proper job. Sorry to hear about your vacation being cut short and ... Chin up, and we're all hoping for good things.

Re: jaundice

Hello, so sorry to hear of your latest news. I just had to chime in here and I may be totally off the mark, but my mother had intrahepatic and was almost symptom-free, and suddenly developed jaundice (I noticed the yellow eyes). She never had to have a stent placed - I think the jaundice was the result of her weakening liver function and infection but the jaundice DID go away after she was treated for cholangitis - so it may just be an infection that can be treated with antibiotics and he won't need a stent. Here's hoping!

Best of luck to you,

Joyce

10 (edited by Colleen Wed, 20 Feb 2008 07:46:38)

Re: jaundice

Mary Anne - I have been keeping up with you and Joe through your blog, since I joined this site.  I always marvel at how active you and Joe are and think how wonderful it must be to be able to travel like you do while dealing with this terrible disease.  My husband Fred also has intrahepatic

Re: jaundice

Colleen-  Sorry to hear Fred's CC has advance so much in such a short period of time.  When you described his CT results I thought you were talking about me.  The only difference is I have not reached the stent stage yet.  I am aware of the unpredictability of tumor growth.  Mine seem to stay put for a period of time them for no reason just grow 1or 2 CM's or another pops up somewhere else.  The two on my ribs actually pitted and ate themselves away.  Really unbelievable how this disease reacts so differently on everyone.  My thoughts and prayers are with you both and hope the metal stent relieves Fred's symtoms.  There is a link abouts stents on this site somewhere that describes inserting stent inside another and sounded as though it worked okay.
God bless,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: jaundice

Please excuse any strange spelling - doing this on a blackberry. Dawn had her stent done at Lake Forrest Hospital by a Gastro Dr named Dr. Haddesman. He did a good job and was the person who made the original CC diagnosis.

Best whishes
Richard

Re: jaundice

Dear Maryanne,
My dad has gone through 8 stent placements at Mayo Clinic Rochester. Very, very good people doing stent placements. He has not had any secondary infections due to the procedure itself which means a lot. Very capable and skilled physicians. I also think that this would be fairly close for you.
Hope this helps,
Lana

Re: jaundice

Hi Friends,
Thanks you so much for all your answers to my jaundice question.  I couldn't get on the site for some reason so I couldn't reply.  I flew home from Bonaire yesterday because I just couldn't stay away.  Joe's procedure was not really successful on Monday.  They got a stent in the right lobe of the liver but the duct in the left lobe is twisted and they couldn't reach it through the endoscopy. Tomorrow they are going to do a percutaneous  transhepatic drain with an outside drainiage bag.  His bilirubin is now 20.  He is not in pain but just very weak and tired.
Colleen, I was sorry to hear about Fred. Things change so quickly with this disease, you just never can count on the status quo. But we are not giving up,we are just taking one day at a time.  Prayer sustains us each day and now we just want to get through tomorrow.  I will let you know how it comes out.  Mary Anne

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Dear Mary Anne,
I have been keeping up with you and Joe and praying for both of you.  My husband, Tommy was diagnosed 13 months ago.  The beginning of his journey was very tough.  His bilirubin got up to 20.  After several plastic stents, a metal stent, and two percutaneous bags, he started chemo and did really well for a long time.  Unfortunately, Tommy is starting to fail again.  His bilirubin is going up again.  The cancer has spread to several areas in his lungs.  THis is such a difficult journey for everyone involved.  I will keep you and Joe in our prayers.  God bless you both.

Laura West
Richmond, Virginia

Re: jaundice

My dad had his stents done by Dr. Parsons at Nortwest Community in Arlington Heights....

The stents did not work though for him so he had to have a tube placed to drain the bile...

Re: jaundice

Hi Friends,
Well the procedure Friday was successful partly as you may have read on the blog.  Since probably everyone doesn't read the blogs I will tell you what went on.  They were able to pass a catheter into the dilated bile duct but were not able to get it through to the intestines.  They feel with a few days of the bile draining externally into a bag the inflammation will go down and they will be able to get through when they go back in on Tuesday.  The people at the hospital were so compassionate, we were very impressed.  An interventional radiologist Dr. Molliere did the procedure. We have made an appointment with an oncologist for March 11th but we are stil unsure if we want to go with conventional chemo.  Hard decisions.  Quality of life or length of life.  I have to talk to in internist tomorrow and see what he feels the MRI showed. I don't know if we are dealing with a serious problem or a terminal condition.  I need to know for our kids sake too.  Joe is still very weak and just sits in in recliner all day.  I know his liver has to rest and rcover from the jaundice but it is hard to watch him so weak.  I so appreciate this website to share with people going through the same thing. Thanks for your support.  Mary Anne