pcl1029

Hi,Gavin,
Thanks for this article.
It provided a relatively simple molecular basis for understanding the cholangiocarcinoma disease , what molecular factors affected the development of CC ;how CC is formed and how it migrated to different sites( ie: the possible reason for recurring at different sites after resection). and the use molecularly targeted agents-such as Avastin and sorafenib to treat CC more precisely than the traditional chemotherapy.
If you like biology and physiology and want to know about this disease ,you may like to read it;it helps me in understanding how CC starts on the molecular level ;hopefully one day the” light bulb” in my head will go off and find some solution to extend the life of myself and others.
Good job,Gavin.
God bless.

Hi,
Below is an interesting prognosis scale for intrahepatic CC from the above web site that Gavin mentioned.
Most recently, Sotiropoulos et al. found gender, AJCC/UICC stage and R0 resection to be the only independent predictors of survival on multivariate analysis and proposed a new scoring system.71 On the basis of these criteria, they used a prognostic scoring system allocating one point for advantageous prognostic factors and two for disadvantageous ones (female = 1, male = 2; stage I

Hi,
Yes , the tumors will continue to grow unless treatments like chemotherapy or radiation therapy provided.
The following 2 cases from this web site may be of help to you in answering part of your questions if no treatments are provided but just having stents replacement alone.

Case22. my dad has cc. he wants no treatment at all. he is 75. we had him to pittsburg. he was supposed to have surgery. he has refused. he wants to past away at his home. we respect his decision. please let me know what happens now.(10/12/2010 entry) dad is very weak. his cc is in the last stages. he is now in north carolina with my sister. he needs constant care. he can’t even walk. he is refusing any hospital care. dad had a stroke about 5 years ago and he can’t hardley talk. his left arm is paralizied, but he still tries. when dad tries to eat it comes back up. not nausing, just can’t swallow. a little pain, not alot. weakness is his main problem. Dad has been admitted to the hospital in NC. He has jaundices again. They are going to do the stents again. He has agreed to a feeding tube . dad was send home. he was not dehyrated nor under fed. Just the cc. put him on antibotics(to keep pnem. away) Hospice is coming today. Hospice has started to help now. He has pain patches and then breakthur meds. hospital bed, potty seat , wheelchair, walkers, the list goes on. I pray my sisters can handle it all. Dad’s eyes are now rolling to the back of his head, when he sleeps. Its so scary. The reason I’m writing this is to keep people, like myself, informed at what might happen .(11/3/2010 entry) hes in alot of pain. have him on metadone and breakthur meds. Pittsburg wants to do another ercp on him he says no. his choice. but he is still hanging in there.. He had the cather took out. still hard for him to use the potty chair.11/8/2010 entry) dad’s not doing good. his heart rate is down to 46. he is just here. they say that his heart will make him go before the cc. I think hes tired of fighting. maybe 2 days to a week left. they say most likely he’ll go in his sleep. He runs a fever and then chills. he woke up ,only to throw up, and then back to sleep. hes weak. oh ,so weak. no smile, nothing.(11/16/2010 entry) update on dad he is walking, talking and has moved back to wva., on his mountain. he still is sick but he seems to be getting better. Is this possible? This man was on deaths door ,now he has surprised us all. Is this a normal part of cc?(12/21/2010 entry) update on dad. he is as yellow as a banana. his liver enz. r 12.5. still refuses the surgery for stents in PA. He says he’ll go to the hospital when he gets sick. He is still walking and eating. his bp is totally normal and pulse is 68. He weights 127. lost 3 lbs.(1/9/2011 entry) i beieve everything happens for a reason. dad was in a bad car accident. he broke 7 ribs. drs said his bones were so thin u could see thru them. that the bad news. good news, since he was in the hospial the drs seen how yellow he was and how high his liver count was(14.7) they done the stent surgery. both stents were completely blocked. they unblocked one side. the other side the klatskin had completely block. cant get that one in. one unblocked stent is better than no blocked stent. if the cc dont get him, he hAS aleast another 2 to 4 months here on earth. his liver cout is now 11. micrales happens.(2/22/2001entry) dad is still kicking(as he says) He had to go to the hospital. He has started to hurt a little more. Just the cancer pain. Other than that hes doing fine. his stent is doing good(he only has 1 working. the other one is blocked by a tumor.) liver 1.5. very good. (4/25/2011entry) update on dad. he is still going strong. he has to have another stent replacement, but so far so good. he still lives by hisself and doing everyday stuff.(6/19/2011entry) dad is still with us. tomorrow is his birthday. Thank God for all the miracles. He will be 76. Still doing his own things. no treatment just some pain meds. still driving, taking care of his self. He is doing so good. its unbelievable. in sept , the drs. said a month at the most. almost a year has gone by and he is still here. a few close calls, some stent replacements, but he is still here!!!!! thats the best Fathers Day ever!!!!!!(9/19/2011entry) its been a year now , dad is still with us. he has two more stent replacement since i was last on here. about every 2 months now. he is yellow again. been a month since last replacement. he seems to be doing good. just pain meds. Still lives by his self. my brother lives above him. keeps a good eye on him. dad looks bad, but he doesnt let it get him down. he has brought him a trailer and had rooms big on. i think it just gives him something to do, cause he has two homes. he has got himself some more dogs to raise. he just keeps busy. he is a unbel.iveable. keep us in your prayers—-sistercorb 10/10/2010.(No treatment,just stents and still doing ok for a year as of 9/19/2011).

Case23. (67 years Female) (9/5/2010entry) My mother-in-law was just diagnosed with bile duct cancer. She has received an exterior drain and goes in this week for the metal stent and ercp test. She is very tired and has no energy. I’ve read after chemo this is normal, but is this to be expected just newly diagnosed? Just 4 weeks ago she was active, busy and full of life. my mother in law is also oping for no treatment. She’s being treated through Mayo Clinic in Jacksonville. She did have a plastic stent inserted just two weeks ago,what a HUGE difference it has made. She doesnt want any surgery, etc. I’d love to stay in touch with you since we are in the same situation . My MIL is only 67 and otherwise was in terrific shape and health as a horse, or we though.We found out she had cholangio around Aug 1st…she was jaundiced (and had an external drain) and boy what a tough 60 days until the stent and capping off the drain. She says now she feels almost as good as she use to. Dr’s are not very promising sounding, very professional but have prepared everyone for the worst at this point. 3.- . (9/5/2010entry)She’s 67 years young! The doctors do not feel having surgery would give her any more additional quality of life time and since she lost her husband to cancer after several major surgeries and recoop, she is determined not to go that route. She doesnt feel the major surgery and recoop will offer her much more time than things just taking their course . Although the dr’s have no said a time limit (thank goodness, there’s no stamp on her–borrowed that from the commercial). She’d rather have the stent and possibly radiation and have as much enjoyable time as possible. I am just concerned that all of a sudden she is so tired. She has no pain and the jaundice has been gone for about two weeks. Her cancer is in the bile duct and tumor blocking the bile from passing. The doctors told us she would more than likely have the same time frame for quality of life with and without the surgery. She’s been to the hospital with dehydration My MIL cant get out of the bed except to go to the bathroom and then it’s a major ordeal for her. This has happened in just a few short weeks – since diagnosis. She is just exhausted to go 20 feet and back. She can’t even talk alot, it just wears her out. She’s completely bed ridden all of a sudden, she cant even walk to the kitchen. She has no pain, no swelling, no problem breathing, nothing other than total fatigue.(9/30/2010entry) She had a plastic stent put in on Monday and some fluids!!! We have a new woman in the house! On Sunday evening she wasn’t even able to lift her head off the pillow. Monday she got “rehydrated” and a plastic stent. WOW what a difference from rehydration. She came home, walked in the house, up the stairs around the house, got ready for bed all on her on. What a difference and we are so greatful! She’s in no pain, not sick and today she tells us she is even getting around the house and sitting on the porch for the second day in a row. We are on cloud 9 for her! (4/26/2011) Today shes moaning while she sleeps, hubby cant really even get her alert. Having a hard time getting her meds in her but getting them down in time, Not eating or drinking and really no communication from her today. Hospice came by for their every other day visit, but it was only an aide so she asked a few questions and left. This is so sad. The moaning is new and we just dont know what to expect next. (4/27/2011entry) Hubby called Hospice today and MIL had a better day than yesterday but of course no days are really good. Hospice is coming out tomorrow to help out even more. We also have the 24 hours being covered. We just want to make sure she is in no pain or discomfort. Yesterday was a glimpse of just what is ahead, it’s just so so so sad. (5/16/2011) Haven’t been on here in a couple of weeks. Lost my dear mother in law and finding some time now to reflect on this dreadful cancer. –isellure 9/5/2010.( no treatment,just stents,survive for 10months without treatment)
God bless.

Hi,
welcome to this web site, I know Gavin from UK will join in soon.
I am a patient from the States and I have a question for you if you don’t mind.
Have you join the BILCAP-a randomized trial in UK for capecitabine for resected patient like you.? If you are in this trial,please tell me how you are doing and for how long. If you never heard of this trial and want to know more,please go to this site and search under the chemotherapy forum for more information.

I believe this is the only way to get more treatment (if you were chosen) after resection for patients in UK.
God bless.

Hi,Kathy,
Just ran across a message entry from this web site as follows:

“I also had this (dizziness)went to Dr. had the sit down stand up blood pressure test. Major changes in readings, but he thought gatorade to replace electrolites would help and did. Good luck check with your doctor.”–Cathy d 2/15/2009
God bless.