I Am The Brother With Klatskin Tumor

Hello, My name is Ray A. L, I have been following this message board for the last few months, (since I was diagnosed with a klatskin tumor).  Anyway I would like to share my story of this life changing, possibly life ending event. I have always enjoyed good health, exercised, tried to lead a healthy life-style. I am 53 years of age. I am a turbine aircraft engine test technian. The first trouble I had and I've been told by the doctors it was not related was my appendix burst in March 2007, no real medical history up to this point. After recovering quickly from this, I brushed it off and went on with my life. On Sept 7, 2007, I became ill with what I thought was the flu. After visiting my local care united center, the doctor didn't like the blood work, sent me for a ct-scan, then told me to get to G.I. doctor fast. I did so of course. Meeting with Dr.Arslanlar of Presbyterian hospital here in Dallas Texas, where I live not far from. The doctor told me it was a tumor, that it was cancer, of course I was shocked, scared, didn't know what to do. We all go through life and face challenges, but this, well, everyone on this message board understands The doctor performed an E.R.C.P. and inserted a temp. stint, which let the bile flow form my liver, which the bile duct blockage by the tumor was what was making me ill. I also had been having some abdominal pain through the summer, but thought it just the healing process from the burst appendix. The doctors @ Presby decided to perform surgery on Nov.11, 2007 with the whipple procedure. The surgery was performed by Dr Thomas Shires. The tumor is located in the left hepatic duct, unfortunately during the surgery it was observed that the cancer had spread to the liver, and abnominal wall on my left and right side. I was closed up and told I would be treated with chemo.I began chemo at the end of Nov., I take xeloda, I have infusions through my port of Gemzar, and Taxotare, I have had about 11 weeks of chemo and was led to belive by the doctors, that the chemo would cure me. After researching the subject, I discovered that wasn't the case. I had a permanent metal stint inserted in Dec. after temp. clogged up. This message board is where I discovered Dr. Canady, and he was gracious enough to see me, after looking at all my medical records, My wife and I met with him in early Jan. and performing a pet-scan, digital image of my liver. (He needs at least 25% of healty liver), he has accepted me as a patient. With his sucess with Cindy Russell, I feel like I have at least a chance now, as her condition was more severe than my own. He has given me hope, where there was none to be found. I am currently waiting for his call to begin the procedure, as he has been ill with the flu. I am back at my job, since the middle of Dec. and trying to lead my life as normal as I can, my loving wife and daughters, my family, my loving sisters, my friends have  been so supportive and caring for me through this ordeal, of course as you all know, it affects the whole family so much.  So, that's my story, I decided to share it with you, we are all bonded through this horrible cancer. My heart goes out to all of you.  

                       Ray A L    Texas

Hello Ray,

My name is Iris and live in the Netherlands. I am 62 now and married to Peter (also 62). Last year April, Peter also turned out to have a Klatskin tumor. A very bad one. Both bile ducts severely infected as well as the liver. During surgery the specialist saw that too much of the liver was infected as well, so no chance of 25% to keep and no chance of removing the cancer. End of operation and a week later Peter was released from the hospital with a prediction of approx. 2-3 months to live.

As you, he allways had a very healthy, no-smoking or drinking, sportive life. Had never been ill or sick to this shocked us to the bones.

Let me start by congratulating you that you really seem to have a better chance than Peter. One bile duct infected and such part of the liver not infected that the sick part hopefully can be removed. The liver is the only organ that restores itsself. And from all the messages on this board I understand that that Dr. Canady is a very good one. (Peter and) I sincerely hope that you are one of the few who are winning this fight. Your mental health seems strong enough.

Ending my message by my beloved Peter. We are ten months later now and he is still with me and our two adult sons. He decided after the broken-off surgery that he was going to live the rest of his days as he had allways done. Positive, strong, with humor and enjoying every day as an extra gift. Three weeks after the surgery he went back to work and he even plays squash again. We know the nasty thing that is lurking, but we are very sure that the strong mental way in which he handles his illness, is giving him and us extra time. He regained in 3 months the 10 kilo's weight he lost. He has two metal stents so he has no itching, no pain and doesnot look yellowish. He says that he does not feel he has less energy and I can tell you: every day is a gift and we are enjoying it. Every now and then there is an attack of fever. Then he takes antibiotics and a scan is made of the stents. A week of antibiotic and he is out and about again.

I wish you and your family this same strength and fighting spirit. And I would very much like to hear the rest of your, hopefully happy, story.

All the best,

Iris.

Dear Iris and Peter, Thank you for your support, and it is amazing and what a blessing that Peter is doing so well, it certainly inspires me and I have been following your postings. on the message board. I am just 4 months out from the surgery, when the doctors decided they could not help me. I was given about 6 months to live at that time. I understand Peters decision not to recieve chemo, as it is not a pleasant experience. After 11 weeks of treatment that I have taken, the last infusion was the hardest one yet. It seems as if my body is saying it can't take it anymore. They tell me will slow the cancer down, but I am tried of the chemo. I will keep you posted as to what happens, and hope the best for Peter, yourself and your sons and family.

                              Ray

Hi Ray,

It's been a couple of weeks now and I am very curious to know how you are doing. Did the doctor start with his treatment and have you any idea how it is effecting you?

Here it looks like it is still going strong, but last week we discovered that Peter has an infected lymph node in his neck. Not such a good message. But he is still his calm and strong self. "As long as I feel good, I'm not going to worry" he says. So we are enjoying Easter-days, the boys are home and the dinners I cooked were special and happy.

Keep strong and please let me know how you are doing. Kind regards,

Iris.