My precious brother

Loving Sister:

Welcome to the site that no one really wants to join, myself included! Now that you are here, you will find lots of support and will make friends and will soon consider everyone on here as part of your family.

My husband Tom also has CC. He was diagnosed in Mar ’08, ONLY because his liver enzymes were 10x elevated. He had NO symptoms whatsoever. After an ERCP, they found a narrowing in one of the bile ducts in the left part of the liver. They brushed the site, put a stent in and sent the brushings off to pathology. The result, CC. Prior to that, neither one of us had even heard the word, let alone how to spell or say it.

After Tom’s left resection, numerous ERCP’s, CTScans, 21 day stay in the hospital, no Chemo/radiation (Doc’s felt it was not necessary as they had clear margins), he left with 2 external drains. One with a JP drain the other with a bag for a ‘pool’ of bile behind the liver, the JP directly into his liver. He had those for 7 1/2 months until the liver healed.

We had 18 months and were able to do a lot of firsts (things we did after cancer) but in Nov ’09 I noticed that he’d started turning yellow. They discovered a new tumor in the right lobe of his liver. This one was inoperable because it involved the hepatic artery. His ‘then’ onc told him to go home and get his affairs in order. He said chemo/radiation would not help and gave him 6 months.

We did not listen to that! We got 2nd, 3rd and 4th opinoins. Thank heavens we did! He underwent 28 rounds of radiation, then about 5 rounds of oral chemo, Xleoda. Went a radiologist ‘read’ one of his CTscans and ‘saw’ a mass, they installed a port and he underwent about 3 rounds of Gem/Cis via IV. Upon a new scan, the ‘mass’ was gone. (??) No one can explain that one!

SO, here we are just approaching Mar. 1, 2011 we will be starting the 16th month of life. (He has outlived that onc’s dire prediction by 12 months). Just goes to show that NO ONE HAS AN EXPIRATION date stamped on their butt!

So we have again experienced a lot of ‘new’ firsts (after being given 6 months). We have had a lot of ups and downs, twists and turns in the journey. He still has an external drain tube as they were unable to get an external stent into the liver. They feel that the tumor and radiation destroyed that section of the bile duct. We even went to Mayo Clinic in the hopes that they would be able to get a stent in but even they were unsuccessful. But at least we tried! Tom will have that external drain for the rest of his life, and you would be amazed at how well you come to accept something like that. It keeps his bilirubin level low so that he does not look like a yellow man. He was very lucky that even when his bilirubin level was 24,900 he did not experience any itching or brain confusion.

He has been hospitalized about three times with infections in his liver, and they have always been able to get it under control. At times it requires IV antibotics for a few days, then oral antibotics. The last one required three weeks of IV antibotics. These infections are a ‘way of life’ for anyone with an external drain tube. We now have Tom on a four week ‘Tube Exchange’ in the hopes that will curtail an infection from starting with the tube. So far it has been successful.

Tom just turned 64. Your brother has his age on his side. Tell him to stay positive (attitude is key), ask questions, do research on this cancer. If he is told ‘no’, he should ask what else they can try. He wants to be certain that his doc’s have knowledge of CC or a physician base that they can tap into. Tom’s doc’s here in Green Bay, Wisconsin also work hand in hand with doc’s from Aurora St. Luke’s in Milwaukee, Wisconsin. Seek 2nd (or more) opinoins if necessary. He needs an advocate to be with him for all doc visits. Someone to take notes, better yet take a digitial tape recorder and listen to it after he gets back home. That recorder is invaluable because as you ‘re-listen’ to it, you WILL come up with other questions. Write down your questions and present your list of questions to the doc and any doc worth their fees should be able to give you answers, and if they don’t know, ask them to research it and get back to you.

Go with God and KEEP KICKIN’ THAT cancer.

Margaret

Hi! At a time like this, words probably don’t help much. Roslyn seems to have hit upon the only solution, enjoying the time you have together. We’ll be praying for you.

Ritchie

Hi Loving sister,
your brother has been blessed to have such a great sister,as you ,& to have known true love in his life. It sounds as if he is in a supportive, loving environment . One day at a time, seems to be how it goes with CC, doesn’t it? My husband has CC also & has been offered only oral chemo & pain killers . He is inopperable, we are told. Each day has special meaning to us now, as it undoubtedly does for your brother & his family. I have decided to enjoy him whilst he is here & mourn only after he is gone. It is important to enjoy each day that God gives us together. CC patients don’t have an expiry date stamped on the soul of their feet, so who knows how long each will live. Who knows how long we, without cc, will live, though? Enjoy the time that God gives you & try to stay positive. Life is a gift, enjoy it as much as you can.
My thoughts & prayers are with you & you precious brother, as they are for all CC sufferers & their families.
Regards
Roslyn