Sharing Research I Have Found & Need So. Cal Dr. Referral

My husband is 29 years old and is stage 4 cholangiocarcina (aka: bile duct cancer aka: adenocarcinoma) He started on a clinical trial at UCI cancer center of xeloda and Gemzar and completed two cycles with shrinkage of tumors before he had an increase in his liver function labs. The doctor waited 3 weeks to see if the abnormal labs would go down because due to him being non-symptomatic he felt it was elevated due to the chemo. It turned out to be an obstruction in his bile duct and duodnem(opening in small intestine) He had 2 stents put in.
Since the doctor waited so long he is since unable to continue the trial. Since then, he has developed ascites(fluid collection in abdomen)and malnutrition. Now he is in very poor condition and increased pain. I have done a lot of research and unlike the doctor has said there are alot of different options out there for cholangiocarcinoma even stage 4-mainly clinical trials and usually dependent on the pt. ability to travel.
There are trials out there attempting to treat cholangiocarcinoma not just palliative treatment which is what I was told. Due to my disappointment with our oncologist not being forthcoming with me, I desperately searching for an oncologist locally because my husband cannot tolerate travel-however an oncologist anywhere in california would still be helpful. Unfortunately we are somewhat limited because the only insurance we have is emergency MSI which is restricted to california. We are trying to muster up some funds should someone know of a doctor that may be outside of california that has experience with cholangiocarcinoma. I will take any advice given.
I would also encourage patients that are told there are no other options to look into clinical trials using photodynamic therapy-and also look into biologic response modifiers(several different kinds are out there),intra arterial chemo, chemo embolization, radiofrequency ablation, radioactive isotopes, conformal radiation, and intesity modulated radiation therapy, internal radiation therapy, and gastric specific chemotherapies such as: comptosar, Gemzar, taxotere, paclitaxel,platinol w/flourouracil, and etoposide and combinations thereof. These are not alternative therapies they are either FDA approved or in clinical trials. I am not endorsing or against any of the therapies I just know they are the few things I have found that have the potential or are in research to possibly help this cancer.
I have also found a website that I wish I would have found in the beginning it is very helpful non bias information and extremely thorough it is: cancerguide.org I have also come across abstracts about biliary tuberculosis that mimicks cholangiocarcinoma it is rare but curable -so you may want to ask your doctor if they know anything about this. My husband was diagnosed 3 months ago and I guess I just posted this because I wish I would have been given some direction when this all started-cancer information is very overwhelming and it is hard to know where to start. Especially when you are dealing with an uncommon cancer.

Dear Tanya. Good start! It is refreshing to read such, & too rare, your intensity! Nevah(x3)give up! Firstly, there should be enough organic sodium in the system at all times, and if so, this variety would not occur! A good series of mineralization will help. His electrolytes are imbalanced, or he would not have ascitic fluid accumulation. Are the biliary stints still in place? I'm not sure where you are, but there are 2 therapeutic centres in San Diego: American Metabolic Institute; & Int'l Bio Care Hospital. Dr. Ornish is in Sausalito. The MacDougall Program Is in Deer Park. Hyperbaric O2 Therapy may or may not be on your "provider's" list, but it has been known by all cancer researchers(since the early 1950's!)
that cancer cells cannot live in an alkaline environment, nor in an oxygen-rich environment!
Another site for your edification: cancertutor.com . . .He knows whereof he typeth! I pray this helps you, and that you know the exhilaration of success very soon! God bless, and good health, Michael L M., ND

See my post in the best surgeons section. Try rational therapeutics, www.rational-T.com. They need a sample of the tumor or they can spin out cells from the ascetis. They tell you which chemos might help. Good luck! And remember that God can heal anything. Keep praying.

Tanya,

Do you have an update on your husband?

My husband passed away July 5th, 2005. His condition was too far for him to even attempt any further treatment. He couldn't get to a doctor nor was a doctor willing to treat him in his end stage condition. I can't stress enough how important second, third, and fourth opinions are prior to starting any treatment. I pray for all of you and your families dealing with cholangiocarcinoma, may you experience precious moments in the midst of the darkness, and may you win your fight!

Tanya,

My wife and I offer you our condolences. I'm sure you and your husband fought the good fight. I wish I could offer you some great words of wisdom, but I have none. In time, your life will find new meaning.

God bless!

Dear Tanya,
As I was reading your story I felt as though I was writting it myself. Except that my husband is 52. We have had a very similar experience and am now looking into photodynamic therapy and was wondering if you found out any other statistics on it or anyplace that you could get your husband on a clinical trial. We have been going to Wake Forest Baptist Hospital Bowman Grey in Winston Salem, NC.and have had some great doctors there. Although initially we thought my husband was a caniadate for resection and had been building towards it first having a portal vein embillization hoping the left lobe would grow enough to resect but instead another nodule formed and he was nolonger eligible . He is in his second cycle of gemzar and our doctor also suggested photodynamic therapy.. My husband had TB in a gland as a child so I made sure that they had done a TB smear but good for you you sound like you have really done your homework . If I find anything else I will let you know and if you could do the same it would be greatly appreciated. I wish you and your husband as well as the rest your family. You will be in my thoughts. Michele

My father passed away on the 21 August 2005, he had Cholangiocarcinoma and was 56 years of age. He only really started feeling ill at the beginning of June this year, so as you can imagine, this has been a total shock to all our family. He started off with indigestion and then became jaundiced - he had all kinds of tests and they thought it was a gall stone blocking his bile duct. A few weeks later he was admitted to hospital and they did a CT Scan and discovered it was cancer, but they couldn't pinpoint what type. They said that it had spread to his bones, lymph glands & stomache & that when they knew where the main cancer was, they may be able to treat but not cure. First they thought it was prostate, then pancreas and then it was diagnosed as bile duct. My dad was told that there was nothing they could do at all, and after three weeks in hospital, he managed to come home on a monday and died on sunday of that week. We are devastated, my dad was told that he hadn't ignored any symptoms, but looking back at photo's, he had been steadily losing weight, but it was so gradual that we had'nt noticed. My dad was a dairy farmer, and it worry's me that he might have got it by using chemicals etc on the farm - but if that was the case, you would think that more farmers would be affected.