My precious brother
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Dear LovingSister,
Welcome to our CC family. External drains can be a problem and after a time the tubes need to be replaced, I take it your brother has a drainage bag that the bile collects in? has the amount of bile he collects reduced? Hopefully now the doctors have decided to fit internal stents this may resolve your brothers bilirubin levels, allowing treatment to start. Have they said if they are going to fit metal or plastic?
I know from experience how hard this journey is with constant up and downs, a real rollercoaster ride. But with the help of the people on here we will help you get through it. Any questions, even if you think they are silly ones, please ask we are all here for you.
Sending best wishes to you and your Brother
Andrea
Hi LovingSister,
Welcome to the site. Sorry that you had to find us all and I am very sorry to hear about your brother and what he is going through right now. But I am glad that you have joined us all here as you will get loads of support and help from all of the great members here. Thank you for sharing your brothers story with us all, he sure has been through a lot.
When did your brother get his stents inserted and did the docs check today to see if they are working as they should?
I came here back in 2008 after my dad was diagnosed with inoperable CC and everyone here helped me so much, and I know that they will do the same for you. It felt good for me to be able to come somewhere where I knew that everyone would know how I was feeling and what I was going through. So I hope that you will keep coming back here and if you have any questions then just ask away and we will all do what we can to help in answering them. Plus if you feel the urge to shout and scream then we will be here to listen to you.
My best wishes to you and your brother,
Gavin
Dear LovingSister, Welcome to our wonderful family and I am just heart broken to read your story and that you had to join us. It is so upsetting when anyone gets CC but we have had quite a few in their 40’s lately and that is really disconcerting. I can just see your love for your brother through the words of your post. I am hoping that it is just a stint problem. Has your brother’s ONC dealt with Cc before? Has your brother thought about getting another opinion? MD Anderson is one of the best for CC and it is in Houston. You have come to the right place and I know others will be joining in welcoming you as well. Please feel free to come here often and use this site to ask, vent or advise. You will find the most caring and loving people in the world right here. Please keep us posted on your brother.
Hi there all. My 46 year old brother was diagnosed with cc in March of 2010. The tumor is on his liver, covering his bile ducts, and inoperable. He has two drain tubes working as his bile ducts.
His first round of treatment was a clinical trial (Scott and White, Temple Texas) which after 8 weeks showed some minor growth of the tumor.
Next, we took him to Baylor Medical in Dallas and had CyberKnife treatment done, which is pinpoint radiation. The objective there was to “kill” the tumor but doctors did warn they would expect it to come back at some point either in the current location or somewhere else.
This procedure was done in early October.
The plan was to let him recoup from that procedure and start on a new trial which they had to test him for….his tumor had to carry a certain gene and be within the 20% percentile in order to qualify and he did! We thought that was great news!?
Middle of November comes and he develops a nasty infection from complications with his tubes that lands him in the hospital for almost 2 weeks.
Finally around the end of January, we go in with hopes of starting the trial and we are told that his liver counts are too high to get into the study. The Dr says it could be from his tubes not draining properly or from active cancer that cannot be seen.
By the way, during all of this he has had several CT scans which show no new growth or spreading but b/c liver counts are high his oncologist just sets him up for standard chemo treatments.
After 2 rounds of chemo, he becomes jaundice and itching again so is hospitalized on Feb. 11 with liver count at 14! Another CT scan shows nothing new and no growth of tumor.
They adjust tubes again, his counts begin to decline, he is released on a Wednesday(Feb 16th) and his count is 9.
He went for follow up blood work that Friday (Feb 18th).
We went for appt this morning (Monday Feb. 21st) and his count is back up to 12 and once again he is admitted into the hospital.
Although Dr says it could still be due to complications from tubes (which they have decided to put stints in now) he also fears it is the cancer creeping into the liver and cannot be seen.
We were told today that there is another study for patients with high numbers but at this time they are full.
The doctor warns that if it is the cancer down in the liver causing blockage, they wont be able to drain that which could/would eventually cause liver failure, coma, etc…
My brother is one of the most precious people i know. Married his high school sweetheart at 18, they have 3 sons and 5 grandchildren. Not to mention, he is the best fishing partner ever!
I am just feeling a little desperate and “broken” today and found myself on here reading these posts so just thought i would share also.
I am a christian and work daily on unshakable faith but i must say that this is taking it to a whole new level.
Would love to hear any advice, comments, etc.
Thanks and God Bless You All!
A Loving Sister
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