Discussion Board Forums General Discussion New diagnosis cholangiocarcinoma inoperable

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  • #35910
    lalupes
    Participant

    Dear cvertz & Paul (revhed), welcome to this wonderful family, ‘though – like the others – I’m so sad you have had to find us. I send my very best wishes to both of you & to both your families.

    Surf2kona – my sister has just finished her 8 cycles of Gem/Cis & has her post-chemo scan tomorrow. Your comment about your brother’s tumour reduction has comforted me greatly – thank you. I hope your brother continues to do well.

    Julia

    #35909
    lisa
    Participant

    I have a friend whose husband suffers from PSC. I told her about the link between PSC and cholangiocarcinoma so they can keep a careful eye on his health. He is in his early 40’s with 2 young children and I pray to God that they don’t have to go through this.

    #35908
    marions
    Moderator

    Rick….I want to thank you for shedding a light on the diseases of UC and PSC. Sure wish that you had not become an expert due to your own experience. I do want you to know that the information you are providing is of enormous benefit to all.
    Thanks again,
    Best wishes coming your way,
    Marion

    #35907
    rick-kamp
    Member

    cvertz,

    I am sorry to hear about your fiancee. I also suffered from UC for many years and then PSC as well (Primary sclerosing cholangitis). Since your fiance has UC, it is quite possible that she also has PSC which can appear on imaging to look like cholangiocarcinoma. It also causes inflammation in the lymph nodes which can make them appear as cancerous but really be benign. It is important that her Dr’s know whether or not she has PSC in addition to her cancer. It can make a difference in the treatment choices that are offered and it may mean that the lymph nodes are not involved.

    This is a stretch, but if the PSC explains away the multiple tumors (instead they are PSC disease related strictures) and the lymph nodes, then Kelly may be eligible for surgery. Also – if it is PSC related then I highly recommend going to Mayo Clinic in Rochester and seeing Dr. Gores. He is an expert in cholangiocarcinoma and knows PSC well. If things fall in line, there is a treatment option that involves liver transplantation that is highly curative. Please keep in mind that I am saying this is a stretch, but it IS something that you should definately have checked out. The UC/autoimmune disease strikes a cord with my own experiences and knowledge of these diseases. Go see Dr. Gores at Mayo Clinic – or at least send him your records for review.

    All my best. I know this is a difficult time for you. I am young also (32) and have a wonderful wife and 2 very young kids. My greatest wish is to always be here with them and for them. Although I am the one with the cancer I think I can understand how you are feeling.

    Rick

    #35906
    sharpeilover
    Member

    Revhed,
    Looking at a post of your from Feb 23- did you send the records to those three hospitals without a visit and get a response? Whom specifically did you send them to?
    So far, we keep hearing from various places that the docs need to SEE my mom before they look at the records and/or tell us what they can do. And it is darn hard to figure out which people to send them to.
    Any help here would be most appreciated.
    My mom has bone mets thourghout her skeleton but no other tumors except one sitting on the gall bladder. So she unresectable, not treatable with anything local, so officially stage IV. She is on gem-cis and has a stent– seems to have stabilized her, for which we are very grateful. But no one is helping us better understand what further treatments wold be available to her should the gem-cus stop working.
    And we are a bit concerned about the diagnosis since the biopsies were all unsuccessful- they guessed at Sloan Kettering based on it being an adenocarcinoma located near the junction between the liver and the bile duct sitting on the gall bladder.
    Anyway we are looking for expert help, and my mother does not want to travel around on speculation- we need to hear first that a doc think there is something to do.
    So sorry to hear you are dealing with such a sad situation yourself. Prayers for you.
    Thanks for sharing you experience at this difficult time.

    #35905
    surf2kona
    Member

    Sorry to hear about your fiancee. My brother is 53 was diagnosed last Nov.

    From what I understand, you don’t want it in your lymph system. M brother’;s lymph nodes were also swollen, but a biopsy did not reveal cancer cells. He has done over four rounds of Gemzcar + cisplatin. His tumor area has been reduced by about 60%. The nodes are no longer swollen.

    He was initally diagnosed as inoperable, but we have found a couple of surgeons that are willing to operate now. We are meeting with Dr. Kato at Columbia-Presbyterian in NY. He does a surgery where he actually removes the affected organs from the body, cleans of the cancer and puts them back. See article below:

    http://childrensnyp.org/mschony/kato-transplant-specialist.html

    We have also talked to Sloan-Kettering in NY, MD Anderson in Houston and Mayo in Rochester.

    We are also doing major diet changes (organic only, cruciferous vegetables, less meat, no refined sugar or flour, whole grains only). We are also using citrus pectin, turmeric, ultra mar and mushroom extracts of off-chemo weeks. “anti-cancer: a new way of life” is a great book.

    Hope this helps

    #35904
    gavin
    Moderator

    Hi Revhed,

    Welcome to the site. I am sorry to hear of your son’s diagnosis last summer and I hope that the chemo treatment that he is undergoing right now works for him as best it can. I would like to join Marion in thanking you for sharing the information that you did as it will no doubt help others. I hope you come back here some more as you will get a load of support from everyone here.

    My best wishes to you and Peder,

    Gavin

    #35903
    marions
    Moderator

    evhed….welcome and thank you for joining our board. I am so sorry to hear that your son is also being treated for this cancer. He is young and strong: a great combination which may benefit him greatly while undergoing the treatments. Your kindness in sharing your story and the name of the physician treating your son is very much appreciated. With this disease the information shared becomes invaluable to all. Thanks again.
    All my best wishes,
    Marion

    #35902
    jeffgrieder
    Member

    Hey Cvertz

    #35901
    elmoks
    Member

    My mom, 54 years old, was diagnosed with CC April 15th of last year. Her cancer is also inoperable becasue of where the tumor is located in her bile duct. She has had several stents put in, which she now has a metal stent and it’s been GREAT, and has done radiation and chemo. She is still doing heavy chemo! They told us that she wouldn’t make it 6 months and it’s been almost a year. So don’t let them dr’s put an expiration date on Kelly. She just has to fight this! Good luck to the both of you! This is a long scary battle, but it is a battle that can be won! Caner is just a word not a sentence!!!!

    Oh…and my mom sees Dr.Beck at the Tammy Walker Cancer Center here in Salina, KS.

    #35900
    revhed
    Member

    CVertz:
    Your fiance’s situation sounds very similar to my 23 yo son’s. He was diagnosed with CC last summer. Recently it spread to his lymph node outside his liver. He is being treated at Northwestern Hospital in Chicago. Dr. Mary Mulcahy is his oncologist and she has been great. Peder’s story is a long one that I won’t go into here but I would encourage you to see if Dr. Mulcahy can help out, especially since you’re in the area. Peder’s records have been sent to M.D.Anderson, Memorial Sloan-Kettering and also U of Utah (they responded and didn’t have any more to offer). Right now Peder is going through some pretty heavy chemo. My best to you and your fiance. Paul

    #35899
    mlepp0416
    Participant

    Cvertz;

    So sorry that you have had the occasion to find and join this site. But welcome, and you will find that this site will give you lots of information. You can read my husband’s story under my login name mlepp0416 (My husband and Cholangiocarcinoma)

    This is not an easy cancer and the journey it takes you on is full of twists and turns and bumps in the road. Just when you think you have if figured out, it throws another curve.

    Kelly is very young to have been diagnosed with this cancer, most people are older when they get diagnosed. My husband was 61 – he is now 63 and still fighting after a liver resection in June 2008. He presented with a new bile duct tumor in Nov ’09.

    The best advice that I can give is to research all you can, ask all the questions that you can, seek 2nd opinoins and enjoy each day you have with Kelly.

    Go with God and KEEP KICKIN’ THAT cancer.
    Margaret

    #3225
    cvertz
    Participant

    My beautiful fiance Kelly, who is 26 years old, just recieved news on February 17th that she had cholangiocarcinoma. She has been suffering from ulcerative colitis since 1998. Recently she had a flare up, which the doctors think is due to the cancer, but for more than 10 years doctors said she had no ulcers and there was no inflammation in her colon. Right now we are in the process of getting a second opinion because her first doctor at Kansas University Medical Center said that her tumors were inoperable due to the fact that they had spread to regional lymph nodes. She has a large tumor in her liver as well as what they believe are tumors in her bile ducts. Any information would be helpful to us as we are just starting our fight against this disease. We currently live in the Northwestern suburbs of Chicago and are looking into the Mayo Clinic in Rochester, Minnesota and the University of Chicago. Again anybody that has information about doctors or a success story about a similiar situation would be appreciated if they were willing to share with me. I know Kelly needs to see some positive things that have happened with this disease and know that any such stories would impact her greatly. I understand this is not an easy cancer and pray every night for all of those people who suffer from this disease. Thank you for all of your help and support.

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