1

(4 replies, posted in Introductions!)

My father-in-law had stents placed and they were changed every 3-4 months for palliative care and this was done 6 times. Not to bad for a 6 month prognosis at iniatial diagnosis. He finally lost his battle after 23 months. I would also suggest a biopsy as Jeff stated, after all how can you treat the unknown. I wish you and your mom the best of luck and I am thinking of you.



                                                                  TFORD

Hello Fighters,

               I would like to write nothing but positive words on here but that didn't come to be yesterday. My f-in-laws scan results showed the chlolangio had progressed into the stomach. He has been on Tarceva for about a month and has had stomach pain and not alot of appetite which the onocologist and ourselves credited it to the chemo. The doc sent him home and we are meeting with hospis tomorrow night. This was the last thing we wanted to hear but we have to accept it and make him as comfortable as possible for his hopefully last few months. For all of you out there fighting this beast I agree with Stacie find a aggresive onocologist that isn't afraid to try new treatments for Gemzar and Xeloda will slow it down but not kill the beast.
               
                My f-in-law wasn't ready to give up the fight but now he is so weak and with no appetite alternative treatments and diets are out of the question. I have read about Radio Frequency Ablation as a treatment which could be an option when battling this, also on the Cancer Survivors Network website there is a blog from robbins egg that said his wife tried Insulin Potentiation Therapy and is now cancer free. This is a questionable treatment which doctors don't reconize but this is not what they are trained in.

                What I have learned from this experience is do not listen to the time the docs give you at your prognosis, he who happens to be our kids no. 1 baseball fan got to travel all over the midwest the last 2 summers enjoying his favorite passtime. I will continue to research this beast and be apart of this site for I have experienced what It can do to a healthy individual. I am a firefighter and work 24 hrs. a day so I have alot of down time that I can research this disease which I have done for the last 19 months. If I stumble upon anything that looks promising I will make sure I post it.

                Does anyone have any experiences with hospis that might be helpful for this is all new to us and don't really know what to expect.


                                                                                                  God Bless,

                                                                                                         TFORD

figen,

           My father in law was on Genxar (gemcitabine) and Xeloda (capacitabine for his cholangio and they actually helped out as his tumor markers went down. The Gemzar gave him very little side effects but the Xeloda gave him mild hand foot sydrome and diarhea. Figen if you go to google and put in cholangiocarcinoma chemo you can learn of these drugs also pub med has listings. Hope this helps you and your mom for they can buy you some time but not a cure.


                                                                                                        God Bless,

                                                                                                                  TFORD

4

(7 replies, posted in Introductions!)

Irene,

           I would advise you to seek a second oppinion after all your husbands results are in. You can read about my F-N-Laws experiences in the introductions. We sent copies of all his scans and biopsy reports to MD Andersons and they got back to us promptly.  They pretty much told us the same thing his onocologist did with the exception of don't look at the statisics every body is different. His prognosis was 6months to a year and that was on 1/3/05 and he is still with us. Irene the chemo will not cure cholangiocarcinoma but it can slow it down. My F-N-law had a tube and stents placed in the bile duct to bypass the tumor to drain bile externally in a bag which worked out really well for him. After that he started a regimine of chemo consisting of Gemzar  for approximately 6 months which did wonders with minor side effects.  After that the drug of choice was Xeloda which also took his tumor markers down. Now he is taking Tarceva which is used for pancreatic cancer and we won't know if this is working until his next scan on 9/11/06. If your husbands cancer is'nt metastised else where he could be a surgery candidate which that is the only long term survival statistic there is. My thoughts and prayers will be with you and your husband. If there is anymore info you would like just ask and i will reply.

                                                     
                                                                                                God Bless,

                                                                                                        TFORD

Hello Jules,

              My F-IN-Law experienced mild hand-foot syndrome along with mild diarhea from the Xeloda but the side effects weren't enough to keep him down. The Tarceva however is really knocking his energy level down , he has to keep a watchfull  eye on his blood pressure from dipping to low along with stomach pain that the onocologist says is not the cancer spreading, also he experiences a very dry mouth at which he is taking a drug to produce saliva which makes him mad because he drools. I hope this helps your father and you as a care-giver make life easier in determining the route of which chemo to take. My F-IN-LAW is scheduled for a scan on 9/11/06 to see if the Tarceva is doing the job and I will keep you posted.


                                                                                          God Bless,

                                                                                                  TFORD

Jules,

My father-in-law has cholangio with metasis to both lungs. Gemzar with Xeloda knocked his tumor markers down and he is doing well. He is now taking Gemzar and tarceva together and these are also keeping the cancer at bay. He was diagnosed with unresectable intra-hepatic cholangiocarcinoma with metastasis to both lungs on 1/3/05 and is still hanging in there with a possitive attitude which is helpfull. I hope the info helps but remember not all people react the same way to the chemo.

                                                                                           God Bless,

                                                                                                  TFORD

7

(2 replies, posted in Introductions!)

Hello everyone I would just like to tell you all about my father-in-laws journey. In 1/03/05 he was diagnosed with unresectable intrahepatic cholangiocarcinoma with metasis to both lungs. The prognosis was grim 6 months to a year tops. His treatment options were a palliative procedure in which a tube is inserted into the bile duct to bypass the tumor and drain the bile to prevent  jaundice. This has worked out relatively well to keep him comfortable. He started out with chemo by taking Gemcitabine which normally used for breast cancer and had great results with all tumor markers going down in his PET scans. After the Gemcitabine held the tumors at bay the onocologist decided to switch chemo to Xeloda for cholangiocarcinoma will develop an immunity to the same chemo drug if used to often. The Xeloda also held the cancer at bay for the span the drug was used. Now the drug of choice is gemcitabine again along with 100 mgs. of  Tarceva daily. He is due for scans on 9/11/06 to find out if these drugs are doing the trick. Last month he developed ascites and the doctor decided to drain off the fluid, 5 litres were drained and the next week 3 litres that did the trick and no more problems since.
As of today his energy level isn't what it used to be, nor can he pound down 2 plates of  food with pie and ice cream but he is still battling and living a productive life. In all your new journys with this damned cancer you will read nothing but bad news on the net as I have. This is a rare and unresearched cancer and I wanted to give everybody a heads up on what we are going through and just because a doctor says 6 months here is living proof of an individual who has taken the percentages 1 year past that  life expectancy. I hope this gives everybody a little bit of hope and if anyone has any questions send a reply and I will get with you and explain doctors terms that I left out on purpose.


                                                                                                  God Bless All

                                                                                                            TFord