Topic: new member

Hello. I have been reading the message boards for a couple of months now and finally decided that I need to post. My husband was diagnosed with bile duct cancer. It all started last September with pruritis. His quack of a doctor told him to drink more water and use plenty of sunscreen. I knew this wasn't right and sent him back to tell the doctor that he needed a blood test. The lab work revealed high LFT's. His bilirubin was 2.5 and his alkaline phosphatase was 727. This news sent us for an ultrasound and CT scan. Both revealed dilated bile ducts. Next we were sent to a surgeon (gall bladder removal), and 2 different Gastroenterologists. Finally we ended up in the ER in early December with jaundice and a bilirubin count over 20. They attempted ERCP and PTC at the first hospital with no success. He was then transferred to another hospital where they were able to do the PTC and put in a plastic sent and external biliary drain. FYI the gall bladder was never removed since that was not the problem. Now we go every 6 weeks to have the bag replaced. They never have gotten a biopsy which shows cancer cells. However, they tell us that it is cholangiocarcinoma and that it is very difficult to get a positive biopsy with a brushing. His oncologist told us that he is 99% sure it is CC. Has anyone else had this experience with a biopsy. I read online that biliary brushing is only about 35% effective.

I have more questions. But,will start with this. Thanks for any and all info you can give me.

Re: new member

Dear Shellina, welcome to our remarkable family, and sorry you had to find us. Where is your huband being treated? You want to make sure that he is at a Hospital/ONC who has had experience with CC, something is not setting right with me.  My Teddy also had external plastic stents that were  replaced about every 6 weeks. It became routine. Are they doing anything else for him? Did the Jaundice leave? Are you near any larger Medical Facilities? Well you had more questions so lay it on us. I think my very first thought is to get to a reputable place where they treat CC. Ask away, that is why we are here.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: new member

Shellina...welcome.  You are correct, brushings rarely come back as positive hence the physicians will take in account all other symptoms, including results of scans and blood for the official diagnoses of CC.  Biopsies rule out a possible liver transplantation therefore, at this point, your physician may hold off from moving forward with this procedure. 
As Lainy has mentioned, you would want to obtain an opinion from a physician/center treating a high volume of CC patients.  Has any type of therapy been recommended?
Please, stay with us - we care.
Hugs,
Marion

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: new member

Hi Shellina! 

My husband's situation is rather similar to that of your husband!

His severe generalized itching (pruritis) began in December 2012 and was followed eventually by jaundice.  Blood tests showed elevated bilirubin levels and  abnormal liver enzyme readings.  A CT Scan revealed a stricture in the distal region of the common bile duct which explained the painless obstructive jaundice.  An ERCP was attempted but failed. A subsequent PTC was successful and a plastic stent was placed (with external biliary drainage bag.). This alleviated the jaundice...at least temporarily. However, the stent became blocked a few weeks later and had to be replaced by PTC.  During the various hospitalizations, 3 sets of biopsies were taken (between 6-9 samples.). Some of the samples were via biliary brushings during PTC (Interventional Radiologist) and others were tissue (by forceps) during Endoscopy with Ultrasound by the Gastroenterologist.  Unfortunately, none of the biopsies confirmed cancer.  All samples were "unreadable" or "inconclusive."  At least 4 Specialists all visualized the stricture during the intraductal ultrasound...and all agreed it looked like cancer.  The Liver Oncology Surgeon has clinically diagnosed Cholangiocarcinoma based on the clinical picture, history, symptoms, CT Scan appearance, etc.etc. but a definitive, confirmatory diagnosis has not been possible.  This apparently is not unusual with Cholangiocarcinoma - diagnosis is often a challenge! The Surgeon indicated they are about 97% sure it is cancer but the "proof" will not be available until more samples are tested at the Lab after extensive surgery.  My husband is scheduled for a "pancreatoduodenectomy" (Whipple procedure) in just 5 days on March 18, 2013.  He is feeling well since the last stent replacement so undergoing radical surgery (when not 100 % sure it is cancer) makes it even more difficult...

I can empathize with the questions you have and the uncertainty you are experiencing...

Please write again as I found responses to my initial questions last month very helpful from this wonderful, caring group!

Best wishes from the east coast of Canada all the way to you and your husband in California!

Warm regards,

~Judy~

Re: new member

Hi Judy. I just wanted to pop in here and say that you should not worry too much about the Whipple. My husbands was August of 2005 and while it is the largest surgery to the body it is NOT life threatening and things have changed even from 2005. If I might suggest, your husband ask for an epideral as it will numb the area for 24- 48 hours. I had abdominal cancer surgery 3 years ago and when I got on the surgery table had the bright idea to ask for one. It sure helped and really doesn't hurt. The day after surgery my Teddy was sitting in a chair when I got to the hospital. The recovery takes a lot of patience but I think it was 4 months later Teddy was back to work part time and golfing shall we say gingerly. Wishing your husband the very best and please do let us know how he is progressing!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: new member

Marion-I didn't understand what  bioposies and liver transplant had to do with each other. I had 2 bioposy the first one they knew would be negative and the second was sent to Mayo for correct diagnose. (It took 2 weeks)
Shellina-Welcome and sorry you had to find us. Lainy and Marion are right about using a major hospital. I was diagnosed by the grace of God by a doctor who knew right away that the bioposy would be negative, that doctor started the chain of events that saved my life. I am starting my 5th year of life after being told I had 6-8 months to live!! There is HOPE!
Lots of prayers_Cathy

Re: new member

Why "Thank You" Lainy!!!! 

I wrote to possibly help Shellina...so what a pleasant surprise to see your thoughtful note to me!!!  smile   

You must have read my mind...very concerned about the upcoming surgery!  The surgeon said the operation will be 8+ hours...and the hospitalization will be 2-4 weeks if all goes well...The surgery consent papers state a mortality rate of 5% and a major complication rate of 40%...No wonder I am anxious! 

The Liver Oncology Surgeon mentioned that the Anaesthesiologist will put an epidural in (for pain control) and this will stay in about 3 days.  A feeding tube will also be placed directly into the small intestine...

Thank you for mentioning about the epidural in case we weren't aware of it!  It should definitely help with pain management. 

I hope to update you all after March 18! 

With appreciation,

~Judy~

Re: new member

Judy, I know I cannot take away your anxiety, I have been there, I know it will all be OK. But honestly before Teddy's Whipple the Surgeon drew pics and said this is the biggest surgery there is but NOT life threatening like say heart surgery. Yes, Teddy's was about 8 hours. Truth be told he had an aborted Whipple after 4 hours  as the ENDO dye had leaked on the Pancreas and destroyed it and the Surgeon needed a healthy Pancreas so he could cut the head. Then 3 weeks later the real deal was done and took about 8 hours. I remember the Surgeon coming in to the waiting room where there was big group of us, his kids and mine. He threw his surgical cap on the floor and with a big smile he said, 'Stick me with a fork I am done!" And we had clean margins! T was in the hospital 2 weeks. You will also see some stragne changes like, T was a chocoholic and after the Whipple couldn't stand anything sweet. I made a lot of comfort foods when he was able to eat more.  Mmmm T did NOT have a feeding tube as he wa seating light foods in just a couple of days. Mayh I ask where your husband is hving the surgery? BTW we have had qhuite a few Whipplers on here and I can't think of a one in that 40%. Any questions?  I will try to answer.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: new member

Lainy, thank you for your latest post! 

The surgery will be at the Moncton Hospital in Moncton, New Brunswick.  (NB is one of Canada's Maritime Provinces.  We are from Prince Edward Island, Canada's smallest province - also a Maritime Province, along with Nova Scotia.)

To travel to New Brunswick, we go across the Confederation Bridge, the world's longest bridge over ice-covered waters!  It's a 9 mile crossing! 

The surgeon mentioned that all my husband's nutritional needs will be met for the first week by the feeding tube.

My husband is a more relaxed personality type than I am which is a good thing!  However, he was just looking for a sleeping pill as he can't sleep...there have been several episodes recently where he's been awakened by nightmares so I know he is anxious too...

I'll stay in touch...and thanks!

Re: new member

jathy.....as far as I remember, the the Mayo Clinic Protocol excludes prior biopsy. Dug around the site a bit and came up with these prior postings:
http://www.cholangiocarcinoma.org/punbb … php?id=410
http://www.cholangiocarcinoma.org/punbb … hp?id=3430

This makes me wonder; possibly not every institution follows the Mayo Protocol for Liver Ttransplantation for CC. 

Hugs
Marion

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: new member

Judy....welcome.  A tidal wave of good wishes is heading your way for the upcoming surgery.   Stay strong and optimistic.  Many others have undergone Whipple surgeries with excellent results - no reason to believe that your husband won't be in this group.
Hang in there and lean on us.  We are with you all the way.
Hugs,
Marion

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: new member

Dear Shellina and Judy,

Welcome to you both and so sorry that you had reason to come her and sorry your husbands are going through this.  I agree with everything that Lainy and Marion have said. It is important to have a medical support from people familiar with CC since it is so rare and second and third opinions are things we encourage on this site.

Judy:  I had a whipple 12/2009.

What I can say generally is that the whipple is a huge surgery and of course everyone recovers differently, but that I am doing fine 3.5 years after surgery.  I was scared out of my mind before the surgery but it really was for no reason overall.  Yes, an epidural is a good thing to have placed before the surgery so that you can manage the pain yourself.  I can honestly say I really never experienced any pain from the surgery since I stayed on top of it with my morphine drip and later with oral pain killers.  I was up and out of bed the day after surgery, I was home in 6 days, I was able to get up and out of bed on my own almost right away and walk up and down stairs after a week home.

I would be happy to hear from you via email so I can answer any specific questions that you have.  Please contact me at randi.barrell@gmail.com.

Hugs-
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: new member

Hi Shellina and Judy,

I would like to send a warm welcome to both of you and tell you that I am sorry for all your husbands are having to endure. My daughter has CC, but thankfully has not had to go through stenting, ERCP, or Whipple surgery. Judy - I wish your husband all the best on his upcoming surgery.  Shellina - Can they do a needle biopsy on your husband? I would definitely make sure you are seeing a doctor that is well versed about CC and is at a major cancer center.

Best wishes,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: new member

Heartfelt thanks to the latest three Moderators, Marions, Randi & Pam who have posted such kind and encouraging messages!  You have all eased some of my anxiety and for that, I am most grateful!

Hugs to All,

Judy <3

Re: new member

Hello again.  I haven't been able to write again because my husband has been in and out of the hospital.  We have been to the ER eight times in the past two weeks.  He is currently inpatient.  His pain seems to be out of control and he is vomiting. They have worked quite a it on pain management.  They have him on Fentanyl patches with Dilaudid for break through pain.  He seems to be more comfortable .  Now we are trying to determine the cause of the vomiting. They are only giving him clear liquids while he is in the hospital. As soon as he comes home and eats light, he ends up throwing it up. Yesterday he also had diarrhea.  To me, it seems that he can no longer digest food. He says it feels like it sits in his gut and then eventually he has to throw it up. I know that when people with cirrhosis or end stage liver disease are near the end, they can no longer digest food. Has anybody had any experience with this? He seems to be going downhill fast.  He sleeps all day.  And today he seems confused. I asked the nurse to request lab work to check his ammonium level.

Re: new member

Oops, I meant to say ammonia level. :-)

Re: new member

Hi shellina,

I am so sorry for what your poor husband is having to endure. I'm sure someone will be along that can address your questions about vomiting. I do know from this site that high ammonia levels can cause confusion. While you are waiting for other replies, you could go to the home page and type in vomiting, ammonia levels, Or any other key word in the google search bar to read other posts about your husband's problems. I hope he begins to improve.

Best wishes,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: new member

shellina....I  assume that your husband is right in that food is not being digested.  Unfortunately this is one of two major issues in advanced biliary cancer:  vomiting and pain.  Based on your postings I understand that surgery was not an option for your husband, correct?  Shellina, I would request a discussion with the physician, as I believe that there is information that needs to be shared with you.  Additionally, if indeed your husband's ammonia levels are high, Lactulose may be of help to him.  Please have this talk with the treating physician.
Hugs,
Marion

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: new member

Dear Shellina,

I am very sorry to hear what your husband is going through right now. I so hope that his doctors can get to grips with his pain and make him as comfortable as possible and also deal with the vomiting. My dad went through all of this as well and he got pain medication injections as extra pain control as and when he needed them. I also want to say to you that I so agree with what Marion says about speaking with your husbands doctor right now. And please remember as well that we are all here for you.

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.