Discussion Board Forums Introductions! by way of introduction

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  • #31637
    ashley
    Member

    HI Donna,
    Welcome to the site. Sorry to hear about your husband’s condition. On the brighter side, my experience with what I have read with this disease leads me to believe that resection is usually a more likely option with a distal tumor, vs. a Klatskin tumor, so that is good news. I don’t see any replies as far as doctors in your area, but there is a new doctor directory set up on the site that should help you.
    The stents that my mother keeps having are plastic and need replacement via ERCP every 8 weeks. Plenty of infections which ultimately ended up with her having to have 4 hours of intraveneous IV DAILY for the last 9 weeks prior to any chemo treatment even starting.

    Have you been told if the tumor is resectable? it would be called a Whipple surgery and many members on this site can speak about it.
    Keep us posted and good luck. Remember that it is not uncommon to get several opinions on this disease.
    Ashley

    #31636
    valjee
    Member

    Hi Donna,

    Sorry you have to be here but you’ll find a wealth of information & lovely people!

    I had PTC drains in for over 5 months – externally draining for about 5 days then internally (though the drain was sealed on the outside but I had a tube under a dressing & also had bile discharge which is irritant as well as some very nasty allergic reactions to the majority of dressings) as my bilirubin levels started to drop.
    And after I’d leant on the bag during the night & made the insertion site bleed rather a lot!

    My hepatologist told me if the bile wasn’t re-directed internally I would become deficient in many things which now escape my memory – sorry – this disease scrambles your brains! He did suggest that alternatively I might like to drink the contents of the bag with CocaCola! I declined that offer….. I don’t like cola….
    The drain was very uncomfortable for several weeks (due to bruising of the liver etc) but eventually you adjust & are able to function better. I found standing for any length of time highly uncomfortable, and bending (e.g. to put something in oven/washing machine) nigh on impossible for a couple of months. I could only sleep in one position for about the same length of time.

    I had problems with infections, it seems everytime the docs went rooting around my bile ducts (I had 3 cholangiograms) my temperature shot up – more antibiotics. Although one of these episodes was due to a nasty cold! I didn’t have any completely internal stents though.

    Hope all the info is of help to you & your husband.
    Being in the UK means I can’t help with doctors.

    Best Wishes to you both, Val.

    #31635
    betsy
    Member

    Hi Donna S,

    I had stents for several months following my liver resection. Mine were plastic and attached to an external bag. I was quite yellow when the stents were first placed. From Feb. to May I struggled with the stents. I kept having high fevers, chills, weight loss and hair loss (due to poor nutrition). In my case, the stents caused more problems than they solved. Even though my bilirubin numbers were high, my surgeon had them pulled in May and my count has improved to where they are now normal. Go figure!

    Also as a side note, after many failed attempts to correct my stents, my surgeon was frustrated with the Interventional Radiology department and went to the Director of Interventional Radiology for help. The Director was able to fix my “plumbing” and has become a huge support to me.

    Hang in there!

    Betsy

    #31634
    mlodge
    Member

    Hi Donna,

    I have an ERCP and a PTC which drains into an external bag.The ERCP came first, but didn’t do much so they added the PTC drain. Both are plastic. The first 2 months after receiving the PTC drain was very uncomfortable and I also ended up with a blood infection (can’t say for certain if this was from the PTC). I have had both stents in for 7months.

    There were a few times when I found a little bit of blood in the bag, but it was only like a teaspoon – that hasn’t happened in a long while.

    Also for the first month, the site where the tube comes out seemed to always be moist with bile. I or the nurse would have to change the dressing frequently.

    As for bilirubin levels – mine are all over the board – they go from 45 – 88. I am in Canada so I am not sure if they use the same measurements in the US for this.

    I have decided to start eating Oat Bran for breakfast every morning – it apparently helps with the elimination of bile in your liver.

    Hope this helps – all the best,
    Mel

    #31633
    donna-s
    Member

    Louise,
    Thank you for all the information about your stent experience. I am not quite sure how to reply to your message, so this is an experiment.
    We are currently battling insurance and other red tape that the newly diagnosed must contend with. Even figuring out what questions we need answers to is a task.
    Thank you again. Donna S

    #31632
    louise
    Member

    Hi, Donna!
    Jaundice was a big issue in determining what I was experiencing. An ERCP was performed in early May 2007. The jaundice had progressed for a couple of weeks after we first determined that the liver was not completing its function. The ERCP showed that the bile duct was being squeezed from a growth on the outside of the duct, so a stent was inserted. Improvement began immediately, but it took most of a month for the itch amd jaundice to clear up. The surgeon I was working with said that we had to assume it was cancer, but exploratory surgery was scheduled for May 29. The pathology report from tissue taken in the surgery confirmed cc. The original site on the bile duct was not cut in the surgery, but the cancer had metastacized to the abdominal wall and a tiny spot on the liver. Both mets were surgically removed with clean margins. I began chemo in early July, 2007 and I’m still here to tell my story. If you want further details, you can use the search function above and put my name in the author spot. We were blessed with remission a couple of times, and I am currently on a monitoring schedule. Since I live in Northern Indiana, I don’t have a recommendation on California doctors.
    Bile is sticky, so how long a stent will last is not easy to predict. My initial stent remained in place for about 16 months. The Friday I noticed my eyes turning yellow again, I called my surgeon’s office. Without even seeing the doctor, they scheduled me to have work done on my bile ducts the following Tuesday. I now have stents in both branches and a stent or two in the common duct. I no longer have the tube coming out of my side to an external drainage bag. These stents have been in place for almost a year now, but the doctor who inserted them indicated that the stickiness of bile means stents usually reclog in 6 months to a year, so I’m again alert to the possibility of itching and the return of jaundice. I’m greatful for each day I have. My stents are plastic, which do not work for everyone, but they do not set off alarms at the airport security, so I am happy. Supposedly, metal stents may be harder to insert, but are less likely to cause the body to reject them and less likely to reclog quickly. I hope I’ve answered some of your questions, but different people react in different ways, so I’m not suggesting what your Dad will experience.
    Best of everything to you and your Dad!
    Louise :)

    #31631
    devoncat
    Member

    Hi Donna,
    I am not from the region so I cant help with the doctor search. However, I did have stents for a bit and in my case, it took awhile for the jaundice to go. I was worried about how slow it was going but my doctor informed me that it takes time in some people to relieve the problem.

    Good luck finding help.

    Kris

    #31630
    marions
    Moderator

    Hello Donna and welcome to the site no one wants to belong to. I would assume that you would first be looking for a surgeon in order to evaluate whether your husband is eligible for a Whipple resection. Hopefully, others will be able to forward some names to you. In the mean time I am attaching a few previous postings concerning physicians at USC and UCLA. I am happy that you have found us and am sending all my best wishes your way.
    Marion

    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=1358

    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=20199

    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=323

    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=1802

    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=2149&p=1

    #2728
    donna-s
    Member

    My husband was diagnosed with cholangio carcinoma in early August of this year. Our understanding is that the tumor is located in the distal portion of the common biliary duct. The tumor was found during an ERCP procedure to alleviate a blockage of the bile duct. We are seeking doctors with a good deal of experience in treating this kind of cancer for consultation. We live in a small city about 65 miles east of Los Angeles, so this is our area of interest. We would especially welcome suggestions based on personal experience.
    A plastic stent was inserted in the biliary duct during the ERCP procedure that has slowly relieved the total bilirubin count. It is not yet at what is considered normal. We would welcome information about experiences with these stents, how long they lasted, and how close to normal they would get the total bilirubin count.

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