Cholangiocarcinoma

Linda:
I am truly sorry to hear about your Dad. I wish someone out there (physician or researcher) could explain to all of us why we get this type of cancer. It sounds like your dad did everything right -- eating and exercising. I think for me, though I gave up red meats over 10 years ago, I did not always eat healthy. I also have alot of stress in my life (type A personality) which does not help at all. However, my cancer had only been in the bile duct. So when I left the hospital I only had a 1/4 of a liver and was minus a few lymph nodes which my doctor felt he did not want to leave in just in case. I also lost my gallbladder and a tumor (non cancerous) behind that. So I was very fortunate. What are the doctors suggesting for your Dad now? Anything I can do to help, I would be happy to try to do. Please know that my prayers are with you all as you go through this process. Please tell him to keep a positive attitude and keep laughing. Laughter is a great medicine. Pls keep me posted.
Sue

I would be happy to share with you what I have, but the guidelines on this site do not permit me to post my email address or ask for yours so that I can send it to you. The collection is up to about 6Mb now, so I usually send it to people in 2 or 3 batches. More important than my research is a recommendation. Go see Howard Bruckner at the Lutheran Medical Center in Brooklyn, N.Y. He is very hard to get a hold of and forget about return phone calls until you become an established patient. He is just overloaded. But he is busy for a reason. He unquestionably saved my wife's life. She was diagnosed in March of this year. Sloan was out of ideas and she, like your wife, was stage 4 and inoperable. She has been taking a complex regimen of chemo drugs since May. The tumor is down 40% and her liver functions are back to normal. The chemo is taxing, but it seems to be working. Stay with it until you get through to him. He is a kind and capable man. If you want to try to post an address where I can send my research, maybe they will let it through. Have faith, read everything you can and never assume that a general oncologist can deal with cholangiocarcinoma. The inititial reading you do will scare and depress you. The disease has a nasty history. But 4 of the 6 drugs my wife now takes were unavailable 5 years ago. The literature is just now recording the imporvement in prognosis. Also, this is often a disease of older people and is often diagnosed even later than your wife's was. So the survival times reported in the literature are much worse than would probably apply to a 37 year-old. If you treat this agressively, as Bruckner will if you get in to see him, your wife may well be attending your 3 boys' high school graduations, notwithstanding the statistics. Good Luck. Jeff

Jeff,

Thanks for the message. Sounds like you are very happy wih Dr. Bruckner. We are in San Diego and are being treated at Cedars in LA now. She is having her 3 round of Chemo this week. She is on Gemzar and Oxiplation. You can send me the info at mccreach at yahoo dot c--

I hope your wife is doing great!!

God Bless!!

-Chris

Dear Jeff S. I had a consult in Brooklyn with the doctor who developed the 5 drug protocol. I am seriously considering going with his protocol for treatment of a second recurrence. Are you still as enthusiastic about it as you were in August? All my best to your wife. It's a nasty disease. Abigail5

I am pleased to hear from someone like you Sue, who is doing well. My wife Dawn had a resection done on Jan 12th. Her surgeon does not recommend Chemo or radiation treatments as a follow up. We feel compelled to ask an oncologist or two what they think should be done. My wife's tumor was small, margins were negative and lymphs nodes negative. Just wonder if we should do more?

God Bless,
Richard

I am wondering if the oncolocgist is Howard Bruckner. He is in Brooklyn and uses these complex regimens. The answer to your question is this: we still think the world of him and trust him fully. However, after a great 8 month run, the chemo seems to have stopped working for us. We are trying some other things, but we still think Bruckner is the best. Good Luck. Jeff

It sounds like you have a good chance of having gotten it all without needing to do follow up (also known as adjuvant) chemotherapy; but do you feel like betting your wife's life on it? I have done a lot of reading on this. The majority of studies (though not all) support the idea of adjuvant therapy improving your chances of avoiding recurrence. Chemo is a big burden on the patient, and I would not go into it lightly, but this is a life and death issue. I would suggest you seriously consider adjuvant chemo. You will find good literature on the NIH (PUBMED.COM) site. Put cholangiocarcinoma and adjuvant into the search window, or maybe liver cancer and adjuvant. Best of luck with this difficult disease. Jeff

Dear Jeff_s Thank you for your reply. I am sorry to hear about your wife. The oncologist is Howard Bruckner. DO you mind telling me what else you are trying. Have you considered Cyberknife. I went for a consult at Sinai Hospital in Baltimore. This is another alternative I am considering.

A more recent development in this area is the Novalis Shaped Beam system. I was very interested in this but was told by 2 centers that these tumors are not amenable to that treatment because it requires very precise imaging, which the location of a Klatskin tumor like my wife has makes very difficult. There is also Therasphere radiotherapy. It involves the injection of microscopic radioactive beads directly into the vascular supply of the tumor. They radiate the tumor from the inside out for about 4 days and then go inert. Success at getting at least some significant reduction in tumor size is up aroung 75%. See Northwestern memorial Hospital, Dr. Riad Salem, as a possible place for that. Radiofrequency ablation (done at the same place) is also a potential option. Consider also Steven Strasberg at Washington University in St. Louis. Good Luck.

Jeff S.

Hi Jeff -

Could you please send me your cholangio and panrcreatic research? My husband, age 56, was just diagnosed with cholangio. My email address is joni at radiks dot net. Thank you so much.