Topic: Introduction

Hello, everyone.  My name is DavidH and my wife was diagnosed with CC on Jan 1, 2006 , with a Klatzkins tumor and constriction of the bile ducts, plus an almost 7 Cm by 7 Cm metastasis in the right lobe of the liver. Thanks to a very determined wife who will not allow a doctor to even speak a prognosis in her presence, a lot of Prayer, some open-minded and helpful doctors, and an Angel on another website who led us to a GI Oncologist who gave us hope and her treatment regimen, she is doing exceptionally well at this time.  Basically 10 months of Gemzar and Oxaliplatin every two weeks has shrunken the metastasis to 2.3 Cm and it is now believed to be resectable.  Also, the GI doctor who has performed her bile duct stent placements (she has one in each duct, both plastic at our request, being replaced every 2 to 4 months by ERCP) says the stents are inserting easier, making us feel the bile duct tumor is also shrinking.  She has tolerated the Chemo unbelievably well, having only minor neuropathy after all this time.  We know there is much more work ahead, but  we can only move forward a step at a time as all of you are, and pray for the best.

In order to learn all I can, I have been reading as many of the members messages I could in the past 2 months before registering today.  I now have a question I hope someone can help me with since my wife is looking at surgery soon.  Peter, I have read of the experiences both you and Marions' husband had at the Lahey Clinic, and both sound impressive.  I have also seen many mentions of M D Anderson's team, but no personal experiences listed with them on this type surgery.  Can anyone provide any, because we are in the Southwest and closer to Anderson.  Also, any other suggestions?

Let me apologize in advance if I do not respond quickly.  I do not have a computer at home so must use my daughter's when it is free from her work, something I hope to rectify soon.  In closing, my best wishes and prayers for you all, and Thank the Lord for this website.

Re: Introduction

David -  please also consider the University of Nebraska Medical Center in Omaha, Nebraska.  It is touted as "the Harvard of the Midwest."  Phenomenal liver program.  Start with Dr. Byers Shaw, bshaw@unmc.edu.  You may tell him in your email that I suggested you contact him.  Good luck and God Bless!  Please let me know if I can be of further assistance to you.  My email is joni@radiks.net.

Re: Introduction

Joni - thanks for your suggestion.  We are still looking around and trying to develop more info, so this helps.  The best to you and God Bless You.

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David - you are welcome!  Best wishes.  After you email Dr. Shaw, please let me know what he says.  God Bless you!  Joni

Re: Introduction

David,
  What are your Drs. saying about the klatskin tumor in the ducts? That is where my husband's tumor is and as you said we feel there has been shrinkage because his stents are inserting easier. Are they going to try and remove the tumor in her ducts when they do the resection? I'm curious because I think most people here have the whipple surgery so that means their tumor is lower in the common bile duct. I have not heard about many having a klatskin tumor removed. Thanks and good luck. Mary

Re: Introduction

David - My friend, Kelly, was treated at MD Anderson.  They were able to shrink her tumors small enough so she would become a candidate for the surgery.  Her surgeon, Dr. Vauthey, was Kelly's favorite doctor.  When they finally opened her up for the liver resection, they discovered the mets to the abdomen and could not proceed with the surgery.  So, I cannot share any details regarding recovery, pain, etc for the actual resection.  But I can say that Kelly loved Dr. Vauthey, and he is regarding as one of the top liver surgeons.  (this opinion comes from doctors I know at other top cancer hospitals)  He did his surgical oncology fellowship at Sloane Kettering, and is now at MD Anderson.   http://www.mdanderson.org/Departments/P … 508BDCCE3A

A great oncologist at MD Anderson who comes highly recommend is Dr. Kathy Eng.  She's actually giving a talk at the GI Symposium later this week.  More importantly, she's a great caregiver.

If you do make it to Houston, please page me.  Kelly's friends and husband are all here, and we'll do what we can to make your time here as pleasant as possible.

30-something caregiver

Re: Introduction

David - before Kelly's aborted surgery, she directed us to Greg Hewlett's website to get an idea of what to expect from a liver resection.  I'm pasting the link to the website below, starting on the day of surgery.  (back in 2003)  Hopefully this will help you ascertain what you can expect.

http://hewletts.org:8080/archives/_surg … 00230.html

30-something caregiver

Re: Introduction

David,
My husband had a Whipple Surgery October of 2006. He is doing really good now. We were out of town and it was an emergency as his bile duct valve had closed and he was terribly jaundiced. We spent 3 months in Milwaukee WI due to other complications. Upon our arrival home in Phoenix he still needed to be under the care of a specialist and we found Dr. James Cashman who happened to be the director of liver transplants at Banner Samaritan Hospital. He is tops here in Phoenix and the area and also does a lot of Whipple Surgeries. Right now Teddy is under the care of an Oncologist but should the  need arise we would call Dr. Cashman in a heart beat.
Hang in and be strong  thas the only way to get through this....and with lots of prayers.
You mentioned Southwest so am not sure where but maybe this can help.   Lainy

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Introduction

Thank you all for your replies, and again my apologies for the slow response. 
     Mary, we honestly do not know yet what will be attempted, but hope the tumor on the bile duct can be removed.  Our Oncologist and our GI doctor can not see this area clearly enough to give good information, and the two doctors we have contacted have each said that scans on an advanced 3-D CT Scanner at their facilities would have to be done for them to give an answer.  The catch is that insurance requires us to make a choice of the doctor we want to go to up front, so we are trying to collect all the info we can.  Also, our oncologist and one of the doctors both feel that if both the metastasis and the bile duct tumors can't be removed, then it is a wasted effort.  Our advising Oncologist in Dallas does not agree, saying that statistics show removal of even the metastasis improves her chances.  When we were first trying to learn all the options last year, we did send an MRI to a surgeon who used to be with the Johns Hopkins bile duct team, but from that early view he said he couldn't operate on the bile duct tumor because it involved the Portal Vein, although he did have hope for the metastasis if it could be reduced (which it now is).  This is why we are looking for the best surgeon with experience resecting the ducts and even the Portal vein if possible.
     
     Lainy,  thanks very much for your info as well.  Mary referred also to the Whipple procedure, which was never mentioned in my wife's case. I also believe it may be because it is restricted more to tumors on the lower duct, but am not sure and would like to be corrected if I am wrong.

     Sara, thanks for the info on the Hewlett site.  I will defintely check that out to learn what we may expect.

     Again, my thanks to you all, and our prayers to you and your loved ones.