80% Survival Rate at Mayo Clinic

Discussion Board Forums Hospitals & Physicians 80% Survival Rate at Mayo Clinic

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  • #23675
    jathy1125
    Participant

    Hi-I am so excited that you are in contact with Dr. Chapman, he is my hero. I hope you scroll up the page and read Wayne’s post dated August 15, 2011, it is very true. I am alive because of God, 2 strangers and Dr. Chapman! The amazing part is that is how he would list it!!
    I just sent you an email, look forward to hearing more from you. Also the cost of liver transplant is about $750,00!! My CC battle has cost almost 3 million dollars!!! I have stopped complaining about my premiums!!
    Lots of prayers and HOPE!-Cathy

    #23674
    pcl1029
    Member

    Hi,
    I concur with what Lainy said above, only the liver surgeon like Dr. Chapman in MO or Dr. Sonnenday in Univ. of Michigan or Dr. Gore at Mayo Clinics in MN can tell you exactly what is the best choice for your Dad.
    The following link may help you understand how the surgeons making their decisions ,resection or liver transplant.

    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=61467#p61467

    God bless.

    #23673
    lainy
    Member

    huong-my, I am sorry but I think only Dr. Chapman can give you your answers, we are not Medical Professionals and only he can decipher the LABs and test reports and will then give you all your answers. If possible perhaps you should get all that in to Dr. Chapman’s and then he will guide you in the best direction. Your questions are good but not ones we can answer. Best of luck and please keep us posted.

    #23672
    huong-my
    Member

    My Daddi–>
    Please give me some advice on this decision. I just talked to Dr.Chapman office and talked to nurse Velva specifically about my dads condition, she asked to send all his file and scan to the office. I would love to do so but before, I need to clarify something. Is my dad absolutely inoperable???. If he is, then the liver transplant would be the option to go, but what if the doctor will do the resection after CT/radiation? THen which is better, the resection or the liver transplant. Since i’m so new to this– I’m not sure what to do in this decision. I do know one thing that the protocol for liver transplant is when patient is absolutely inoperable and should I just send my dads data in for Dr.Chappman to review and he will then determine from there? Dr. Chung which told me my dad tumor site is at the Y-site which is hard to resect, said that he want my dad to do Chemo and radiation and would review if my dad is operable or not later on. Should I wait for this, letting my dad go through this CT decision or should I just go straight to Liver transplant.?.. What if the size will go down and be resectable later, then is it a wrong idea to have the liver transplant be in process??>.. this is my biggest concern. Please respond, ANd how about the cost?> My dad has medicaid (molina)… so financial wise is a concern also.. SInce i live in michigan and Dr.Chapman is in MO, (what is the estimation $$)

    #23671
    marions
    Moderator

    In following Eli’s great posting I would like to mention that soon we may see liver transplantation for intrahepatic CC patients also. (Not at Mayo.) I will keep everyone posted on the ongoing developments.

    #23670
    Eli
    Participant

    Hi Venkat,

    Just wanted to add that Mayo Clinic is *by far* the most experienced hospital that performs LT for CC.

    Here’s a recent article written by Mayo doctors:

    http://www.ncbi.nlm.nih.gov/pubmed/22504095

    Note the stats:

    They examined 287 patient cases from 12 US centers between 1993 and 2010. All patients had liver transplant for perihilar CC. Out of 287 patients, the vast majority (193 cases) came from 1 center. The abstract doesn’t say which one, but I’m almost certain that it was Mayo Clinic itself. After all, they are the ones who invented “Mayo Protocol” of treating CC with LT.

    Fingers crossed that your friend is eligible for LT. Please keep us posted about his updates.

    Best wishes,
    Eli

    #23669
    tvvenky
    Member

    Eli and Cathy,

    Thank you so much for Dr. Sonnenday’s and Dr. Chapman’s references. Cathy, your story is inspiring – thanks for sharing.

    I have passed the details on to my friend, and we are all so very grateful to you for your quick and detailed responses

    thanks again
    venkat

    #23668
    jathy1125
    Participant

    Venkat-Welcome and sorry you had to find us. I am a CC survivor due to two liver transplants. I just did my 3 year cancer free birthday this month. I am alive because of Dr. William Chapman at Barnes-Jewish Hospital St. Louis MO. My CC was stage4 and inoperable, I also could not have a resection because of the location of my tumor. Liver transplants are becoming a more viable option now, but some doctors and hopsitals still feel it is a waste of good organ to give it to some one with cancer.
    I suggest you consult with a doctor who believes it is an option and let them rule out if your friend is a candidate. I highly recommend Dr. Chapman, he is one of the top 100 doctors and has a heart. I am leaving his phone number because he will take your call, 1-314-362-5376. (transplant department)
    Please read my story at thetelegraph.com under christmas miracle or on my FB page (Catherine Sims Dunnagan). I also have another CC success story by Dr. Chapman on my FB page, and another CC success story of a 5 year survivor because of a transplant. Please feel free to contact me if I can help more. I am proof there is HOPE!!
    Lots of prayers-Cathy

    #23667
    Eli
    Participant

    Hi Venkat,

    Only a small handful of hospitals do liver transplantation to treat cholangiocarcinoma. Off the top of my head: Mayo Clinic, Barnes-Jewish, University of Michigan.

    So the first question to ask:

    Does Moffitt Cancer Center use LT as a treatment option for CC?

    If they do, ask them whether they considered him for LT. If he is not eligible, ask them to explain why. The eligibility criteria is very strict.

    If they don’t, he must get a second opinion from one of the hospitals that do LT for CC.

    Eligibility criteria should be fairly similar across all hospitals. For the reference, here’s University of Michigan protocol and eligibility criteria:

    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=4527

    Eli

    ADDED:

    Here’s a very good article about liver transplantation for CC:

    Curing cancer by replacing livers!
    http://www.ksat.com/news/Curing-cancer-by-replacing-livers/-/478452/9222812/-/gsrjbc/-/index.html

    The article touches on the eligibility criteria:

    Quote:
    What are the criteria for a patient who would be able to have the transplant?

    Dr. Sonnenday: Patients for whom we think liver transplantation can be a treatment for their bile duct cancer are subjected to two different levels of selection criteria. The first is about their cancer: is the cancer confined to the liver and the bile ducts itself? We do a series of tests to make sure that there’s no evidence of cancer elsewhere including the surrounding lymph nodes. The patient can’t have an appropriate surgical resection option. The reason that we exclude patients who have a resection option even though the outcomes could at least theoretically be as good or better with transplant is that we just don’t have enough transplanted organs available for all the people already who need one. To offer liver transplantation to people who have other treatment options at this point we don’t think it’s appropriate. So, appropriate patients have to have bile duct cancer confined to the liver and bile ducts and not have a surgical resection option.

    Then they have to be a transplant candidate by all the traditional criteria. They can’t have other medical conditions that would prevent them from getting the most appropriate outcomes after transplant. Patients with other cancers, or patients with advanced heart disease or lung disease — things that would make the recovery from transplant more difficult – are not candidates for liver transplantation. Those are the same criteria that we use for any of our patients who are being considered for liver transplant.

    BTW, Dr. Sonnenday posts here from time to time. If you don’t get the answers at Moffitt, consider contacting Dr. Sonnenday for a second opinion about LT.

    #23666
    tvvenky
    Member

    I’m posting on behalf of a friend who’s recently been diagnosed with cholangiocarcinoma. He was diagnosed in April 2012, he has a single tumor that is impinging on the bile ducts, including secondary ducts, on the left and right sides of the liver (which is why the doctors at Moffitt Cancer Center have presently ruled out resection). It has not metastasized.

    The initial internal stents seemed to work for a week or so, but then the doctors deemed the stent to have slipped, and inserted two internal stents, one each on the left and right sides. That didn’t help much either, and now my friend has two external drains. The good news is that his bilirubin is finally dropping this week, slowly (now 8.5 or 8500).

    We have been wondering why liver transplantation has not been considered as an option for him, and I came across this topic as well as this link: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3095469/
    that references the “Mayo protocol” and it’s success.

    Since no one seems to have posted on this topic for a year now, I was hoping to rekindle the discussion – any recent experiences related to liver transplants, advice and/or opinions will be most welcome.

    Again, thank you very much for all the help and support.

    venkat

    #23665
    jathy1125
    Participant

    AMEN Wayne- I am living breathing proof that a transplant works!! I post on here all the time that I am alive because of Dr. Chapman. I can never say or put into the right words about this man. I can only keep saying that I never even knew I was that sick, because of Dr. Chapman’s positive attitude.
    I never want to “ruffle any feathers” on this site, because we are here to help each other. It has been very hard to keep quite when negative things are posted about transplants by people who have not gone thru the trial or are just posting a research line from a medical journal. As much as we don’t want it to be, a transplant is our only real cure. (80% is great odds!)
    I know that not everyone will qualify for at transplant and when I just visited with Dr. Chapman the one thing we discussed, is that a transplant should be ruled out by a doctor who believes its an option.
    I can not say enough about this man, I shouldn’t be here, especially after my hepatic artery ruptured. I was given the last rites twice, that speaks for it self. I am alive because of God, two strangers and Dr. Chapman. And once again I will say that is how Dr. Chapman would list it.
    Lots of prayers for all fighting- Cathy

    #23664
    lainy
    Member

    You must have another Teddy! Thank him. I am positive he is so very proud of you. Kathy, someone told me that if Teddy and I could make the last 4 months ‘our precious time’ that I would never look back and see CC as the monster it was but only see our precious time! It really worked. We were like newlyweds. Every time a new nurse from Hospice would come Teddy would tell them we were on our honeymoon. I can honestly say that I would have only done one thing different and that would have been to keep Teddy at home and not take him to a hospice facility as you know. Otherwise I would not trade those 4 months for anything. I have to be honest here and I have been looking at some dating sites. OMG! So needy and lost are these men over 68. I am not looking to be a nurse & purse! My own company is better than what I see! I say I am looking for a Godfather/Valentino as that was Teddy to me. I know I shouldn’t be comparing but for me Sicilian is the way to go. I have only met a man once, for tea and in 10 minutes he was holding both my hands. NOT! I sat for 2 hours with my hands under the table. Too funny. My 2 Grandsons out here make much better dates. They are 15 and 17 and even open doors for me! Mmmm I just had a thought that they do that because to them I am old! :):):)
    Kathy, it doesn’t matter if you live another 50 years and I hope you do….but make your precious time.

    #23663
    kathyb
    Member

    Thank you, Lainy. My husband told me to tell you that he loves you. We both cried as I read your post.

    #23662
    lainy
    Member

    Love it and you, Kathy!!! I don’t think we can live each day in a good way without hope. As much as Teddy went through we never talked about giving up even when told his options were nil. I would hate to look back now and feel should we have, shouldn’t we have, maybe another doctor, maybe anything. We were always hoping something new would come along. But it didn’t envelop us. We used our time wisely with love and with smiles. And when he walked in to the kitchen to see me, 2 days before I had to take him to the Hospice Facility and 5 days before he passed….and he held his arms out and he said, “I want to dance with you” and he started singing our song…..that still breaks me up but what a wonderful memory that is. Anyone can walk outside and get hit by a car and not have the wonderful goodbyes that we did. I just hate to see anyone get CC but know what? I would be a Care Taker again to have the 4 months at the end that we had. We filled a lifetime in to 4 months. We had hope!

    #23661
    kathyb
    Member

    I highly agree that the Mayo Clinic in Rochester and Washington University in St. Louis are in the forefront of liver transplants. It’s truly tragic if doctors do not tell their patients about this possible option.

    BUT to say “…there is no other treatment that offers more than a few months of survival” is very discouraging.

    I go to Mayo Clinic and went through the protocol. Like many others I did not qualify for a transplant. As a person with inoperable cc I am now almost 24 1/2 months since diagnosis. Miracles do happen, do not loose faith.

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