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La fundación de colangiocarcinoma (CCF) ahora ofrece servicios de traducción en Español. Por favor publique sus preguntas en Español y un intérprete le va responder.
Posts found: 22
My wonderful Father passed away on March 9th. Truly a beautiful man. Thank you for your support. I , as many of you, will never be the same again.
Hello, I have not been on site in long time. My father had multiple bile duct stents and then in past 2 months two duodenal stents. They are now clogged and we are told they can't put another one in. A drainage tube/bag for bile had been put in. They offered another "procedure" to eliminate bag with internal external drain. It didn't work. He has been throwing up bile in hospital and had not slept in a week. They put a ng (nasal gastric?) tube into his nose into his stomach to have the bile sucked out so he wouldn't throw up. He had pulled it out in sleep last night. they said they can poke a hole in his stomach and add a bag for the food backed up in his stomach. Then they said cardiologist say its high risk due to his age and other conditions. He will no longer get nutrition. we now have decisions to make. He was first diagnosed with bile duct cancer and then later they changed it to pancreatic cancer. He is my best friend and greatest ally in this world. He had chemo and radiation and has been off it a long time due to weakness. He has suvived a long time and is fighting now.
Doc said nutrition via shots/iv is dangerous
doc said he can't handle chemo
doc said 2nd radiation dose can't be done.
In my mind, if he gets radiation tumor may shrink a tiny bit and unblock duodenum which is still parially open. they won't do it.
felt obligated to document this on this site for some reason.
My father is being treated at Memorial Sloan Kettering in New York by Dr. Eileen O'Reilly The most caring and professional folks I've ever encountered.
HI Sharonlee. It sounds like you mother is in good,capable medical hands. I am praying her tumor shrinks.
Low platelet counts are preventing chemo treatment. I heard that sesame oil may help. Has anyone tried this?
Gavin, I think they said that Gemcitibine works better than 5-FU. I read that Tarceva has better results but who knows? I will search this site as you and Lainy mentioned.
It seems cancer in my father has not metastasized but spread close to an important blood vessel so whipple is not an option now. They will give him gemcitabine to try to kill some of it and re asses in 2 months. Starts tuesday. RWJ said it was CC but Sloan says pancreatic. Treatment the same. They said the 5fu wouldn't help with this type of cancer. I don't even know what it is but I asked. has gemcatabine alone helped anyone with this?
yes scan with contrast. Surgeon says its stage 1 or 2. suggests chemo and says no rush. Says not candidate for whipple now. this makes no sense to me. No word on cyberknife either. A consultation with Dr. Oreily will hopefully answer more questions. God Bless.
We finally went to Sloan. RWJ said he needed bypass surgery no matter what but we found out from Dr. Oreily about a test that shows much more than a pet scan. At RWJ it felt like we were bothering everyone and they were cold. Sloan is better. Test includes dye I think but I can't remember the name of it. He'll go next week. If it shows cancer spread to important blood vessels then whipple is out for sure. He probably will not have this even if possible. They told him it was probably cancer 2 years ago. Nothing showed for all this time but last stent change a 3.5CM tumor. My dad is acting differently and it is a little tough. I am trying to be strong as you all appear to be.
I think incurable because of his health. Diabetes, 2 of 3 arteries fully blocked and other things. Only thing is whipple which would probably be too much as he is 84 also. We shall see what petscan shows.
Hello, I have been off this site a while. My father's unseen tumor is now about 3 cm. They found it last week when inserting metal b-duct stent. We are told it's incurable. He has petscan apt. next Thursday and we will try to get him into sloan k asap. I heard they are caring there. Bypass surgery has been mentioned. He also has a lump on his leg that makes me fearful this has spread. He is so loving, caring , funny and great. You would love him if you met him. Sorry to be so wordy.
Marrions, thank you for the info and links. Lainy, thanks for the info as well. I am glad your Teddy had success with cyberknife. Regarding my dad, It could be scar tissue causing blockage but ca-ca19 level was high. I guess they need to know exactly what is causing it and where it is for cyberknife. They can't see it on these cat/petscan machines. Thanks again!
A while back surgeons told us cyberknife is the same thing as what is out there already with less side effects. They pretty much put it down. I believe it can shrink tumors but has it ever got rid of them? also Is a petscan better than a catscan? What is the difference? Forgive my ignorance in these matters. My father is on his 2nd metal stent and I'm sure they said he had a tumor but now they say no growth in bile duct but something is still blocking it. Seems exploratory surgury is the only way to know but I've doubts about that. Thanks!
Thanks for sharing your great news. My father is 83 years old and it is encouraging to hear a glass half full story of someone his age. God bless!
My deepest sympathies for you and your family Elaine.
Thanks. My father will be going in for a biopsy in the next few weeks/month your post plus what I've read in my sleepless internet studies shows the needle biopsy (fine needle aspiration?) can spread. Does anyone know if ercp biopsy can spread? Is it possible for an ercp biopsy to not yield results? When they put his metal stent in they said they couldn't biopsy because they didn't have the right machine? They did brushings (non conclusive) It is confusing.
My father is facing the surgery or no surgery now. His heart doc said he did good on stress test. My father was almost hoping the doc would say no surgery but now decision time is coming closer. All of your insights are helpful. Thank you.
Hello - We met with gastro today. They have to take out the big metal stent they just put in to get a biopsy with a "baby scope" that goes into the bile duct and give him a new metal stent. Makes me angry they didn't do it first time. They only did brushings. I asked about the things I read about like ca19-9 tumor markers and he said they are only about 50% accurate and medicare won't pay for it. I asked about cyberknife and he said the results are the same as other radiotherapy but with less side effects My father feels very good at the moment which makes it even more deceiving. He is aware that he would most likely not pull through the whipple surgery as 2 of his 3 main arteries to heart are 100% blocked. The tumor is less than 1cm but may be connected to pancreas but he said they can't tell. Gastro also mentioned bile duct bypass surgery but this seems for comfort and less stent replacement visits. Every day with my dad is a gift. He had a grandmother with cancer who was given 6 months to live and lived 10 years to come back to the doomsday doctors to their surprise. He believes this will happen to him. I keep reading how fast this cancer grows. Thank you for your support. I am praying and hoping for those on this website. God Bless you
On Sept. 2 my father had an ercp and a metal stent put in. a brushing test was inconclusive. An appointment to discuss situation with the gastro doc who did the ercp is now in October. I'm worried time is being wasted. shouldn't a biopsy be done immediately to determine if the tumor is definitely cancer? The surgeon says it probably is. Time is ticking and we are waiting for these doctors to make appointments to talk. It could be another few weeks to a month after that just for the biopsy. Am I unduly panicking? I don't know what to think or do but i feel that now is the time for something while the tumor is small. I am praying for those on this site and am encouraged by the good news/ whats working section.
Thank you for your thoughtful responses. My father has mentioned he may not pull through if he gets the operation. The tumor is located in the main bile duct . My parents are waiting for doctor to call and make appointment for biopsy. Surgeon is convinced it is cancer. I will research cyberknife. I read about pdt and that it can kill some cancer cells and shrink tumor but I guess you can't keep doing that . Thank you again for your responses.
My father had itching for four months and was told he had scabies which he didn't. After tests we were told a small tumor in bile duct. He did have jaunders. A brushings test was inconclusive and a biopsy will be taken soon. My father is 82 years old with quite a few health issues . He had a metal stent put in during ercp 2 weeks ago. I have been reading for over two weeks day and night and understand the grim outlook but here are my concerns which I would like your help with. His tumor is less than 1c. My father has a healthy appetite and no pain. The surgeon seemed cold and insensative to my parents but I guess this is how it is sometimes. IF cancer I'm guessing its early stages? They told him they can do the whipple surgery if his heart doc approves (which he probably won't) or maintain it but they didn't say anything to him about anything else. I read average life expectancy after diagnoses is 3months to 18months (high end). He was not told anything. Sorry being wordy. My soul is torn as many of you can relate. thank you for reading this.
Posts found: 22
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