New Member
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- This topic has 21 replies, 9 voices, and was last updated 11 years, 6 months ago by 2000miler.
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October 11, 2012 at 3:37 pm #65554jathy1125Spectator
Bruce-Welcome and like everyone else, so sorry you had to find us. I am a CC survivor. I have an amazing story to share, please read it at http://www.catherine
dunnagan.com under the telegraph link. There is HOPE.
I was “cured” by Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO. My tumor was also inoprable and my only HOPE was a liver transplant. I was told 6-8 months with out one and like your wife and many others in our CC family the diagnose came out of left field, I was fine on July 30,2008 and dying on July 31, 2008!! Several of our CC family have contacted Dr. Chapman for second opinions and I know of at least one that life was saved because he said yes to surgery when another said no. Dr. Chapman is an amazing doctor and person, he has a heart and soul.
Please contact me if you have questions or just want to talk.
Lots of prayers and HOPE-CathyOctober 11, 2012 at 4:20 am #65553lisacraineSpectatorHi Bruce,
I have had two liver resections at The Cleveland Clinic Foundation by Dr. John Fung. When it came to chemo I wanted a second opinion and emailed Dr. Javle. He requested my records from the Cleveland Clinic be sent to him and he reviewed them and agreed that I was on the right chemo drugs.
LisaOctober 10, 2012 at 11:13 pm #65552pamelaSpectatorHi Bruce,
I can’t answer your question about MDA, but Lisa or Tiffany might be able to help you. I wanted to welcome you to this site and say that I am thrilled your wife was able to have a resection. It’s nice to see that you got 2nd and 3rd opinions to make sure you were doing the right thing. I wish your wife all the best with her recovery and whatever treatment you decide on. Take care.
-Pam
October 10, 2012 at 8:34 pm #65551gavinModeratorHi Bruce,
Welcome to the site. Sorry that you had to find us all and I am sorry to hear what your wife has been through. She sure has been through a lot. I am glad that you have joined us all here as you have come to the right place for support and help, and I know that you’ll get a ton of both here from everyone.
Please let us know how things go for your wife and I hope that she is able to be seen by Dr Javle. We are all here for you.
Best wishes to you and your wife,
Gavin
October 10, 2012 at 7:43 pm #65550marionsModeratorBruce….a warm welcome from me to you.
Congratulations on your wife’s successful surgery. Your diligence in persuing information from qualified and experienced physicians is remarkable. The obtained information gave you the power to make an educated decision.
Given that you are in pursuit of obtaining information regarding adjuvant therapy I thought to enclose the following links:http://www.wjgnet.com/1007-9327/pdf/v18/i21/2591.pdf
Additionally the UK is conducting a trial of possible interest to you:
http://clinicaltrials.gov/ct2/show/NCT00363584?term=bilcap&rank=1 (results not expected until 2014)In progress for extrahepatic CC, but not recruiting:
http://clinicaltrials.gov/ct2/show/NCT00789958This trial is still recruiting:
http://clinicaltrials.gov/ct2/show/NCT01313377I hope not to confuse you, but given your inquisite mind this may be of help to you.
Please, stay in touch. I am sending all my best wishes your way.
Hugs,
MarionOctober 10, 2012 at 6:19 pm #65549lainySpectatorDear Bruce, welcome to our extraordinary famiy but sorry you had to find us! WOW!
Your wife really went to war and back and I am so very happy that the surgery was a success. You really did your work on this one. I believe it proves why we believe in other opinions if only to satisfy us that we are doing the correct thing. I think if you would e mail your post to Dr. Javle and also ask what chemo he would recommend you will hear back from him. He may want copies faxed of Scan and LAB reports. I am wishing your wife continued success and please keep us updated as we all truly care! You are both awesome!October 10, 2012 at 6:06 pm #74622000milerSpectatorHi Everyone,
My name is Bruce and I live in Metairie, LA, a suburb of New Orleans. On August 21, 2012, my wife had pains in her chest and thought she was having a heart attack, so I took her to the emergency room at Ochsner Hospital. She stayed there all night during which they did a blood test, which showed her liver numbers were very high, and a CT scan which showed she had a 5.4 cm. x 4.5 cm. mass in the right section of her liver and another smaller one in a nearby lymph node. The swollen lymph node was compressing the common bile duct reducing the flow of blood and causing the inside of the duct to bleed. The blood made its way to the pancreas which caused pancreatitis and it was the pancreatitis which made her feel she was having a heart attack. She was admitted to the hospital.
At first they were going to do a biosy, but decided against that because of the probability of spreading the cancer. During the next few days, they did many tests on my wife including three endoscopies, the first for investigation, the second to place a stent in the common bile duct where the lymph node was compressing it, and a third to do an ultrasound map of that area. At the end of the tests, Dr. Reichman concluded that my wife had bile duct cancer, which had spread to the liver and a lymph node. He recommended doing a liver resection in which he would remove about 72% of the liver, including all of her right section and possibly some of her left section, the lymph node, and part of the bile duct. He said that the absolute minimum remaining liver after a resection is 20% and he doesn’t operate if its not at least 25%. He set up her operation for September 6th. The Ochsner cancer board agreed with him.
Dr. Reichman has excellent credentials and a super bedside manner, but being unfamilia with himr, we thought we should get a second opinion. Later, he even suggested we get a second opinion. One of my wife’s family members is a general surgeon and we asked him, but he could not recommend anyone in New Orleans and suggested we go to MD Anderson. We were under the impression that you had to have cancer for MD Anderson to accept you and since the cancer wasn’t proven, we didn’t investigate that. My daughter, who was an oncology nurse, had contacts at MD Anderson and they suggested that we should get an opinion from Dr. John Mansour of Southewestern Medical Center in Dallas, who also has excellent credentials and a super bedside manner. We agreed and the contacts set it up. We met with Dr. Mansour for 1.5 hours during which time he told us that my wife should not have the operation, because the left side of her liver was smaller than normal and he thought there was a chance the liver would not grow after the resection. He recommended doing a procedure to force the left section to grow which take about a month during which time he would use chemo to try and reduce the cancer. Both doctors agreed that chemo is effective in only 30% of the cases. He presented it to his cancer board and they all agreed that my wife should not have the operation.
We met again with Dr. Reichman and he did not budge from his recommendation that my wife should have surgery. He emphasized that this cancer was fast growing and that they couldn’t operate until a month after the chemo was stopped, in which case there would be at least a two month delay before the operation during which the cancer could grow. Being confused, we thought we should get a third opinion and Dr. Reichman suggested his mentor, a Baylor expert, so we investigated that and the Baylor expert stated he saw no reason why the liver could not be resectioned. The operation was moved to September 12th.
The operation was 100% successful. The margins were clear and only the one lymph node had cancer. The cancer turned out to be CC, as Dr. Reichman thought.
My wife does have to have chemo and she has an appointment with the Ochsner oncologist on October 22nd to discuss her chemo treatment. In the meantime we are looking for a second opinion on the chemo treatment and would like to get it without having to travel. I’ve read that others have received a second opinion on chemo treatments from Dr. Javle of MD Anderson and I would appreciate any information on the procedure for obtaining an opinion from him.
Bruce
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