Mom with CC
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Jennifer, Glad your mom has you in her corner!! I also had an amazing daughter helping me thru this, she even took a semester off college to stay home and take care of me.
Kim is an inspirational women, I loved chatting with her on the phone and FB.
I always say that if my regular doctor had not been on vacation, my story would not have had a happy ending. It was just by the grace of God that I was put in Dr. Chapman’s hands. I had my diagnosos and treatment plan with in 5 mins of ERCP discovery, Dr. Guisppe Aliperty knew exactly what he saw, knew it would be a false negative and a transplant was my only hope.
Another intersting person to contact is Wayne Parson (He is on FB). Wayne is an attorney in Hawaii who’s wife was diagnosed with CC and has such an intersting story and so much CC info to share. Valerie, his wife did not make it, but he and I both think Dr. Chapman walks on water!!
Please feel free to contact me on FB (Catherine Sims Dunnagan, my story and another Dr. Chapman success story is posted on my page) or email me. I would love to talk to your mom.
Lots of prayers-CathyThank you all for responding to my post! It’s nice to not feel so alone. We had our initial consultation with MD Anderson and the doctor there was amazing. She listened to and answered all of my questions. I thanked her for not telling us to go home and enjoy the time my mom had left and she said that that was ridiculous. At MD Anderson they tend to treat rather aggressively, she said some people would even accuse them of being too aggressive. My mom had extensive labs, tumor markers, chest x-ray, CT chest, abdomen, pelvis, 4 phase and her case with the results were presented at Liver Tumor Board last Tuesday. We return this Monday for the results and the plan of action for treatment. I will keep you posted! Cathy, you and I have a mutual friend, Kim. I found her on Facebook because I was investigating her surgeon Dr. Kato from New York Presbyterian. She and I talk frequently on FB and spoke on the phone last week. She had told me of you and your story when I mentioned to her that if MD Anderson was not successful we were heading to Barnes-Jewish for the next evaluation. I had already made that decision! I would love to chat with you sometime. On second thought, I would love for you to chat with my mom sometime! Thanks! Faith in Healing (Jennifer)
Faith-I am a CC survivor and alive because of not one but two liver transplants. A transplant is our best hope. My miracle worker was Dr. William Chapman at Barnes-Jewish Hospital. The one thing me and Dr. Chapman discussed last month, that if you are or are not a candidate for a transplant let it be decided by a doctor who believes in them!!
Please read my story at thetelegraph.com under christmas miracle. You can also go to my FB page (Catherine Sims Dunnagan) and read my story and another CC survivor story thanks to a transplant and Dr. Chapman. MD Anderson believes in transplants so good luck. You might want to contact Dr. Chapman he is one of the top doctors in CC care.
There is HOPE!
Lotsof prayers-CathyHi Faith and welcome to our wonderful family but sorry you had to find us. Like Gavin, I too am wondering why the surgeon said no transplants for CC.
That is actually the best way to handle CC and in fact Gavin just posted today that U of Michigan is now going to do transplants. John Hopkins, Mayo Clinic Rochester, MN and MD Anderson Houston are all tops in the field. I am very glad you are getting in to MDA and getting another opinion. Please keep us posted on your Mom’s journey. I know it is a huge shock but honestly once a game plan is in place the fright turns to fight. Best of luck and know you have come to the best place.Hi Faith,
Welcome to the site. Sorry that you had to find us all and I’m sorry also to hear about your mum. But I’m glad that you have joined us all as you have come to the right place for support and help, and you will get loads of that from all of us here.
I know what you mean about being shocked when you hear the words not surgical candidate, I felt like that when we were told of my dads CC and that it was inoperable as well. You have done the right thing in coming here and seeking further information for your mum, and the better informed you are the better you all will be when it comes to making decisions.
That is good to hear that your mum is being referred to MD Anderson. I have no personal experiences to share with MD as I am in Scotland, but I know that your mum will be in good hands there. And I know that others will be along soon wh will be able to share there personal experiences of MD with you. We have a list here of major treatment centres that can be found here, and MD is one of the best-
http://www.cholangiocarcinoma.org/majorcancercenters.htm
Liver transplantation for CC is not that common, but it can be done for some people. We also have a board here for transplantation –
http://www.cholangiocarcinoma.org/punbb/viewforum.php?id=46
Out of interest, why did the surgeon say to your mum that he didn’t believe in transplantation as a way of treating CC? Did he say to you how experienced he was in treating CC patients? I know that there are a few facilities in the US that will look at transplantation if they beleive it is an option and Mayo Clinic is one of them.
That is great to hear you say that your mum is a fighter and that she does not just want to go home and sit on the porch. It sounds like she has a very positive attitude and this will help her so much here. Do you have a date yet when your mum will be seen at MD? I am sure that you will find out more there and please let us know how this meeting goes and what they recommend for your mum. And if you have any quesions, please ask away and we will do what we can to help. We know what you are going through right now and we care.
My best wishes to you and your mum,
Gavin
Hello! I would like to say thank you for this great website! My mom, age 61, was diagnosed with CC in March 2011. She had a large mass 17cmX14cmX12cm. We were first shocked but then addressed the mass with chemoembolization once the words “not a surgical candidate,” were told to us multiple times. She has had 2 chemoembolizations with doxirubicin and her MRI now shows a lot of central mass necrosis, but still some viable tumor. We are now in the process of being referred to MD Anderson for further evaluation. Please tell me what your experience has been at MDACC. My mom does not want to be told to go home and sit on the porch again. She is a fighter and truly the strongest person I’ve ever known. I keep hoping for someone to tell me she is a candidate for liver transplant, but the last surgeon we saw said he doesn’t believe in transplant for CC. Please give me some words of advice.
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