Newly Diagnosed, new member ????

Discussion Board Forums Introductions! Newly Diagnosed, new member ????

Viewing 13 posts - 16 through 28 (of 28 total)
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  • #70521
    pcl1029
    Member

    Hi,
    May I ask who was the surgeon and where you had been treated?
    Do you still have CT scan or MRI or lab work for follow up and how often?
    thanks to stop by our website.
    God bless.

    #70520
    kilgoresouth
    Member

    This is my firs time on this site. It is good to know there is a place to go to get info from others. I am a 76 yr old female, diagnosed June l, 2011. It was like I was running around one day and the next day having surgery for this cancer. I was in the Tampa Bay area but now reside in upstate N.Y. to be closer to my son and his family. I am very satisfied with the surgeon and believe I had as good of outcome that can be expected.
    Right now, I am on mild meds – other than fatigue – I have few symptoms.

    #70519
    rosegrace
    Member

    Thanks Marion,
    We are still deciding what to do. Joanie doesn’t want to do the chemo if it will make her really sick…

    #70518
    marions
    Moderator

    Rose…metal stents are considered permanent and can hinder or prevent further surgeries. Are you then going along with Mayo recommendation for chemotherapy?
    Hugs,
    Marion

    #70517
    pcl1029
    Member

    Hi,
    Please forgive me straightly go to the heart of the issue about your Mother-in Law. As always, use the best judgement that you can to make the best decision from information collected thru the internet. Not all of them are really useful, including this website amd me as well. I am only a patient and not a doctor.
    If I were you:
    1. Time is of the essence and I will recommend you to get 2nd opinions ASAP by 2 liver specialists (surgeon) ,one(any one) from Sloan-Kettering and the other one is Dr. Kato from Columbia/Pres.(ask specifically you want to see him. ). go to see or have the record sent to them(ie: computer CT scan disc and written reports,pathology report and slide if any, and MRCP and lab works done from Mayo to the 2 doctors. Of course, face to face meeting provide you more info. and the character of the doctor and hence your confidence in them.Compare what the two surgeons’s comments with Mayo’s and try to make the best call you cam for her.

    2. Chemotherapy are of limited value ,it will be palliative and not curative. surgery is the only possible cure for CCA. Adjuvant therapy ,however, may prolong survival after surgery.

    3. Get the 2nd opinions from the surgeons first, and ask them if having the metal stents insertion will affect their surgical decisions for your MIL.
    4. university of Iowa is an excellent and comprehensive regional care medical center.(good ranking in general health care) but I do not think they are specialized in cholangiocarcinoca and PSC. I was graduated from Iowa city long time ago.
    keep in touch and
    God bless.

    #70516
    lainy
    Participant

    Hi RoseGrace, I found this e mail, if it does not work as I have seen 2 different emails on here, please let me know. He is supposed to be wonderful and very compassionate. Best of luck.

    mjavle@mdanderson.org

    #70515
    rosegrace
    Member

    Lainy- did you have luck emailing Dr. Javle? I searched the discussion board and say a thread where you had tried that route.

    #70514
    rosegrace
    Member

    Rainy day at the beach, so we are spending time around the computer working with this.

    Joanie does have a plastic stent right now, but the itching and jaundice and dark colored urine are back, she has an appointment next week to place a metal stent at Mayo.

    The insurance is denying coverage at Mayo because they say she could have it done at University of Iowa because that is in-network and Mayo is Out of Network. She has not been to the U of Iowa, so maybe they will refer her to Mayo anyway—that is our hope.

    Does anyone have an email for Dr. Javle at MD Anderson– we are thinking of getting a second opinion as so many of you have suggested him.

    #70513
    clarem
    Participant

    Hi Rosegrace,

    I just wanted to say hello and that there will be so much support, knowledge and advice here for you and your family. Hopefully the itching will start to settle now that she has a stent in meaning her jaundice/bilirubin level will come down.

    Clare

    #70512
    marions
    Moderator

    Rose and family…..indeed, you have a bucket list, but it is a list that can be addressed.

    The fact that a liver transplantation has not been ruled out is something worth looking at. Our Cathy has numerous stories to tell hence, I expect her to chime in on this subject.
    As Lainy has mentioned, a second consultation with a surgeon “very familiar” with CC is something I would consider also.

    In re: to plastic vs. metal stent: at this time and with so much uncertainty about further applicable treatments, I doubt that a metal stent will be considered. It is no clear from your posting as to whether your Mother in-law has been fitted with a stent however; she will feel significantly better thereafter.

    Not quite sure about the reasoning of the Insurance Company to contact the University of Iowa, but I would try to find out. With this disease, I would stick with the major cancer center.

    I applaud your family for the involvement and interest in obtaining the most knowledge for the treatment of your Mother in-laws’ treatment options. With your help she is assured that she will receive the utmost best care and support.

    This board is comprised of the most caring and kind people – I am positive that many others will chime in real soon.

    Please stay with us and continue to reach out to us. We are in this together.
    Hugs,
    Marion

    #70511
    lainy
    Participant

    Dear RoseGrace and The Family, welcome to our remarkable family but sorry you had to find us. I can just imagine how all your minds are spinning! You are already doing all the right things. And a family vacation was really the best. I can’t comment on a Whipple and a Transplant together but I just know one of our astute members will be able to. My husband had a Whipple at 73. It is a BIG surgery, but not life threatening. His CC was also near the head of the pancreas. We are big believers in 2nd and 3rd opinions and Mayo is one of the best but this would be such a huge step if it was me I would still want another opinion. IF for no reason than to validate what has been diagnosed and the treatment. One suggestion I have: If Joanie is still itching there is a cream called Sarna at Walgreen’s and CVS.The itching can be horrible and until Teddy was stented it really helped. He also took lots of cool showers and even used ice bags on parts that were itching more. I am wishing for the best for Joanie and please keep us updated on what is happening, you have come to the best place you can be for CC as we all really care.
    P.S. I was born and raised in Kansas City. I still miss Winsteads.

    #70510
    rosegrace
    Member

    Joanie is 67 years old in otherwise great health

    #8185
    rosegrace
    Member

    Hi All,
    Thank you for all the information on this website. My mother in law was recently diagnosed with bile duct cancer and psc (at the same time). This website has been most helpful as all of us try to learn about this diagnosis.

    Joanie started having symptoms in mid-January 2013 while vacationing in Florida. The initial symptoms were itching, dark colored urine and acid reflux. In Feb, on a Wednesday, the itching was so intense, she went to a clinic for the first time. At this point, the nurse practitioner recognized she was jaundice. The next day labs and ultrasound was performed. That evening the nurse practitioner called and reported the test results for the liver functions were approximately 5x higher than normal. Her Alkaline Phosphatase was 856 and her Bilirubin was 5.5 She said Joanie needed to see a GI specialist immediately. On Friday, she had a CT scan and an appointment with the GI specialist. The CT Scan significant finding was: common bile duct wall thickening or enhancement concerning for inflammation of the common bile duct.

    Tuesday, Joanie had ERCP and plastic stent placed at OakHill Hospital. The ERCP showed a tight distal CBD and diffusely beaded irregular appearing proximal CBD, intraheptatic biliary ducts. At this point, strictures are noted and beading in the ducts. The diagnosis from the pathology was focal moderate chronic portal inflammation and focal portal fibrosis and mild pericellular fibrosis. The pathology showed no malignancy in the liver from the brushing.

    On March 7 and 8, she had a MRI and ERCP spyglass at Mofitt Hospital. One week later, her doctor called informing her she had 2-3 cm malignant mass. The mass was in the mid CBD extending to superior margin of the pancreas, but the pancreas was normal. Findings: Extensive common hepatic ductal thickening present to the bifurcation and thickening of the distal gallbladder and cystic duct. Irregular beading of the intrahepatic ducts and left hepatic duct suggesting sclerosing cholangitis. There was a stricture fo teh left hepatic duct at the bifurcation. There was a periportal lymph node high in the porta hepatis measuring 1.5 x 1.1 cm.

    Joanie lives up north and was vacationing in Florida, so she was referred to Mayo Clinic in Rochester MN. March 26 was her first trip to Mayo Clinic. On the second day of office visits, she met with a surgeon. He said she would need a whipple operation along with a liver transplant. The whipple was needed because the mass was so close to the pancreatic head. The transplant was needed because the right lobe of the liver was so affected. The right lobe was “dark” there were no ducts showing going to the right lobe. He advised that that she would not be able to withstand both procedures. He did not feel she was a good liver transplant. He advised consulting with ONC.

    The ONC recommended putting two different chemos together. This is supposed to be a mild chemo with minimal side effects. Joanie may also be part of study by Bayer taking place at Mayo. This entails taking the two chemos plus a third drug.

    Mayo transplant team looked at her case again, and there is a slight chance she could be a candidate for a liver transplant, but they need to do more tests to make sure the cancer has not spread to lymph nodes.

    So… here we are… all the immediate family is gathered down south… yes from Florida to Minnesota back to the ocean. Its on Joanie’s bucket list for all of her family to gather at the beach. We all hopped in our cars, and drove down to spend this week with her.

    Now we have some decisions to make and would love some advice/insight from those of you who have been through this before.

    What are your experiences with chemo? Is it mild like they say? What can we expect from the chemo? How about the whipple and liver transplant— has anyone had both done successfully? Also, her insurance wants her to go to the University of Iowa– has anyone been treated there? How about the stents– right now she has plastic, but will need another one placed soon– metal or plastic?

    Joanie is feeling ok. She gets a little tired, itches a bit, eyes are slightly yellow, urine color gets dark and then normal, lost a little weight. No pain.

    Thank you for taking the time to read her story and help us with our questions.

    Thank You,
    The Family

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