My husband has cc
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Tiff1496: he just had exploratory surgery and 1 lymph node and other tissues were removed and biopsied and the lymph node was positive, other tissues were not. It just stinks to go into treatment thinking that he was going to be transplanted and having our radiation team telling us that it would not spread since he was receiving treatment. Well it did. Now our surgeon and oncologist disagree in that the Oncologist says the last MRI shows it was stable and to continue Xeloda until it proves ineffective, but the surgeon says he wouldn’t say it was stable. We are trying to get into MDA now, I trust our Oncologist, but not so sure about the Oncologist.
Hi there!
I also go to MDA for treatment. After about a year of my cancer being under control from chemo, my doctor there sent me to Houston Methodist to see if I could get on the transplant list. I did and was transplanted about 4 months ago.
I will say, my transplant doctor said he would not do surgery (of any kind) if there was mets outside the liver. So they are 100% sure that the nodes have cancer?
I’m so sorry you are having to go through all this.
Hi There –
I am in Atlanta too and my husband has CC. We are currently being treated at MD Anderson. My husband is in a trial. The trial is in pill form so we only have to travel there once per month. He was diagnosed in April. I would really recommend that you go see Dr Mark Johnson or Dr Sellers at Piedmont. They work together. We have seen Johnson twice and we love him. They are aggressive. They will not do surgery on my husband right now because he has tons of affected lymph nodes. BUT, it does not sound like that is the case with your husband. My husband, Travis, is 38 and we have 3 little kids. I am so sorry that you are going through this. It is awful. Contact me anytime. We are in Marietta. I will be happy to share what we have learned.Thank you all so much for the warm welcome. I am so eager to learn more about Cholangiocarcinoma. I’ve been able to fax his records to two different facilities, and look forward to hearing back from them.
Hi welcome. Sorry to hear about your husband. My diagnosis is different and I do not have a klatsin tumor. However I am young, 34 and have 2 small children and definitely understand what you are going through. I don’t have any advice as far as what you are looking for but a lot of people on this site do. Good luck on yalls journey. Definitly look into other opinions. I have not done that myself but will be in the future. Hang in there!
Marion –
I did know. It was interesting to listen to. He is a really great guy with a great sense of humor which came in handy more than once. I did learn not to hug a surgeon right after a 14 hour surgery. There’s a reason they keep the OR’s so cold. What I liked about him really though was he never assumed that just because I was a nurse that I understood everything that was going on but after surgery when we got home, I called a lot and we were able to keep Mark out of the ER several times because he trusted me enough to have me do things for him that normally he wouldn’t ask people to do. I have nothing but great things to say about him.KrisV
Beardme….I too would like to welcome you to our site. Already you have been given great advice. You might also want to peruse our Our Medical Advisory Committee listing:
http://www.cholangiocarcinoma.org/medicaladvisorycouncil.htm
Please keep us posted. We are in this together – we care.
Hugs,
MarionKris….did you know: Dr. Rocha received a young investigator award from the Cholangiocarcinoma Foundation via ASCO (Conquer Cancer Foundation?) You can also view his video presentation on our site:
http://www.cholangiocarcinoma.org/media.htm
Hugs,
MarionHello there – Welcome aboard the roller coaster for CC. My husband was diagnosed in May with Klatskin’s tumor with lymph node involvement – one that was very close to the tumor was positive. We had the resection on June 4th and while it was a 14 hour surgery I can say we are doing well now (there are some good days and bad days) and on chemo to hopefully kill any cells that may be left. We had our surgery at Virginia Mason in Seattle by Dr Flavio Rocha and are continuing our treatment with Dr Vincent Picozzi at Virginia Mason. I have to say that I love both of them. Dr Rocha did a Roun-en-Y with a liver resection with removed 7 lymph nodes total with only the one positive.
I did not know much about CC before this (despite being a nurse) and did not join the website until after surgery but I would not change who we had do everything. Of course financially for us we could not have afforded to go anywhere else even if we wanted to so I am glad we got lucky.
I am sure you will have more chime in on great places to go and those that would be willing to give it a try. Dr Rocha told us before surgery that he would only NOT do/finish the surgery if he found distant nodes positive or any other metastasis int other words significantly advanced disease.Keep us posted and certainly ask any questions.
KrisV
Hi-I am a CC survivor due to two liver transplants. I am alive because of God, 2 strangers and Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO. Everyone on the CC site knows I think he walks on water, and am very biased, but once again he just changed the diagnose of a women given no HOPE and he was able to do a resection on her!! (She since in the last few months has ran several 5k’s). Dr. Chapman is one of the top docs and also the most kind caring, and humble doctor. He has changed at least 3 CC members diagnose.
Jim-glad to see someone else putting Dr. Chapman’s name out there!!
Please let me know what if I can help.
Lots of prayers and HOPE-CathyHi-I am a CC survivor due to two liver transplants. I am alive because of God, 2 strangers and Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO. Everyone on the CC site knows I think he walks on water, and am very biased, but once again he just changed the diagnose of a women given no HOPE and he was able to do a resection on her!! (She since in the last few months has ran several 5k’s). Dr. Chapman is one of the top docs and also the most kind caring, and humble doctor. He has changed at least 3 CC members diagnose.
Jim-glad to see someone else putting Dr. Chapman’s name out there!!
Please let me know what if I can help.
Lots of prayers and HOPE-CathyHi Beardme,
I’m sorry to hear about your husband’s diagnosis. I too had a Klatskin tumor, and was first evaluated under the transplant protocol at UCLA. Because of lymph node involvement, I was also dropped from the protocol, which is not atypical. More surprising to us, they were unwilling to do a resection because of the lymph node, and elected to put me on palliative care. Before agreeing, we sought a second opinion at USC with Dr. Robert “Rick” Selby. He did two resections on me, including a lymphadenectomy.
So, if the lymph node involvement is the only reason they refuse to do a resection, I think you are exactly right – you need a second opinion from a more aggressive surgeon. I can only recommend two surgeons, one in Los Angeles (Selby) and one in Pittsburgh (Dr. Wallis Marsh, UPMC), with whom we had consultations and they agreed to surgery. Hopefully, others will chime in with recommendations closer to you.
Best wishes to you and your young family. You will be in our thoughts and prayers.
Mark
Dear Beardme, Welcome to the best little club in the world that no one wishes to join but know you have come to the right place. I am so sorry you got that ticket on our roller coaster. I know you will be getting some great advice on here so hang on and hang in. I can’t suggest much for transplant as my husband had a Whipple surgery. Just wanted to welcome you and tell you to have hope we have a lot to give here! Please keep us updated on hubby’s progress!
Hi,
the link below may help .http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=81006#p81006
Since you did not mention your husband’s disease by stage or why he might be trying to qualify on the liver transplant list, my guest is he is stage IV.
Mayo Clinic is the place that developed the liver transplant protocol for hilar cholangiocarcinoma liver transplant; and I believe MD Anderson in Houston
may be willing to do liver transplant for intrahepatic CCA .
So that may be the best places to start with.
God bless.
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