mlepp0416

Maggie:

Although it is true that many times the CC can come back, his chances with Chemo may have been better for a longer time in between tumors if he’d had the chemo after his left liver resection. He had Intraheptic CC, the original tumor was in the left side of the liver about 2 1/2 CM above the buifaction of the main bile duct where it separates and branches into the left and right side of the liver. His tumor was in the left side, and they were able to get clear margins. His new docs figure that if he’d had chemo the new tumor would have possibly not developed so quickly.

Of course with all the research that I have done on this cancer, I have learned that there is a good possibility that it may have re-occured and that it was just a matter of time. Research does show that the only cure is a resection and that for those who do experience a re-occurance of a tumor, their chances are even less than one who does not experience a re-occurance.

Given that, my husband was one of his surgeons success cases. They found the tumor quickly, within three months time. In January of 2008, his liver functions tests were completely normal, in March 2008 his Alk Phosphate was 10 times elevated…and three weeks later they found the CC. For 18 months we lived in a fools paradise as all his doctors told him that he was cancer free. Now to make matters worse, the surgeon reused, (Yes I said reused) the original stent that had been in his liver at the cancerous site for three months. When she cut away the diseased left half of the liver, she took that stent out of the left half of the liver and reinserted it into the rt remaining biliary tree. Wonder of wonders, that is where the new tumor appeared.

Go with God and KEEP KICKIN’ THAT cancer.

Margaret

Lainy:

You better believe that we thought of you and Teddy each day as well. I certainly wish we could have met both of you, but in view of everything, it’s better that Teddy devoted his time to his immediate family.

Tom and I are taking a trip to Flordia in about 4 weeks to spend time with his niece, it should be a fun time for both of us.

Give Teddy our love and prayers.

Go with God and KEEP KICKIN’ THAT cancer.

Margaret

Theresa:

My husband Tom who has CC and has been through Radiation and Chemo has lost 67 pounds and is now down to 116 lbs. There are a lot of things out there designed to help a person lose weight, but nothing to help a person gain weight.

One of Tom’s doctors told him that the only way he will be able to gain weight is to get his body more active and rebuild the muscles back up, walking, exercise cycle, etc. along with eating good healthy foods. Although some of his muscle tone has come back, to date he has not gained any weight.

One of the things that I could advise is to eat 6 smaller ‘meals’ a day rather then to eat 3 meals a day. So, Breakfast, snack, lunch, snack, dinner, snack. That way you are keeping your belly full all day. However, if all you are eating is fruits and vegetables and whole grains you may not be able to gain weight. I would concentrate more on the Pasta’s (you can get whole grain pasta) and get more meat/fish/poultry/pork, etc in your diet. Hope this helps…but if you find anything that works better please let me know, cause I’d certainly be willing to try it for Tom.

Go with God and KEEP KICKIN’ THAT cancer.

Margaret (My husband and cholangiocarcinoma)

Hi Michael:
Welcome to the site that no one really wants to join. My husband Tom has CC and had a liver resection in June 2008. They removed 3/4’s of his liver and he did have clear margins. We questioned Chemo and were told that with clear margins, there was no reason for chemo.

Needless to say, 18 months later, he turned yellow and we were told that he had a new tumor, unresectable because of it’s location. He was given 6 months by the VA oncologist. We were told that Radiation and Chemo were not an option. We did not accept that and went for other opinoins. Needless to say, we insisted on Radiation and Chemo and found new doctors. So here we are now, 8 months later, the tumor is shrinking (He is on Xleoda) and has had 28 radiation treatments. (so the VA oncologist can take his 6 months and shove it) ohh, that is harsh isn’t it?

But it just goes to show that no one has an expiration date stamped on their butt! And if you are not getting answers or no hope from one doctor, then you need to run to the next doctor and find someone who knows about CC and someone who at least gives you hope!

You can read more about my husband on my posts (My husband and Cholangiocarcinoma) Yep, back in March of 2008, I had no clue what Cholangiocarcinoma was and did not even know how to spell it. But I have learned a lot about this cancer in the months since that fateful day, and the one thing that I have learned is to ask a lot of questions, keep thinking outside the box, do a lot of praying, stay strong and be confident! And even with clean margins, insist on Chemo. Tom’s doctors that he has now are saying that even with clean margins, he should have had chemo and he most likely would not be in the position that he is in today if he would have had chemo back in 2008 after his resection.

Go with God, prayers are coming your dad’s way from Wisconsin.

KEEP KICKIN’ THAT cancer.
Margaret

Rick:

Just thought I’d share some positive news with you. Tom has been on Xleoda and his tumor has shrunk from 1.5CM to 1CM…so it does work to shrink those CC tumors….

Go with God and KEEP KICKIN’ THAT cancer. Glad to hear you were able to be there for your daughters birthday party.

Margaret

hello Brian:
After my husband Tom had his resection, he also had a bile leak from the cut side of the liver. He had an external drain tube for 7 1/2 months and eventually the liver healed and the leak stopped. During this time I did a lot of research and found that for those people who develop a leak, the median time for such a leak is about 63 days…needless to say, each case is different.

Since another surgery to ‘repair’ the leak is always risky, most doctors prefer to insert a drain and allow the liver time to heal.

Go with God and KEEP KICKIN’ THAT cancer.

Margaret

JC:
Let me join the others in welcoming you to this board. So sorry to hear about your mom. My husband Tom had two external drains after his liver resection for CC due to a bile leak. He carried those drains around for 7 1/2 months before the bile leak healed. In Nov he presented with a new tumor and they were unable to place an internal stent. He has now had his new external drain for almost 7 months and although the external drains are a nuiscance, they do a wonderful job of keeping the bilirubin levels near or at normal range.

The external drain is not the most ideal situation, but they do serve a purpose. Hang in there and ask a lot of questions if you go to the doctor visits with your mom. My husband was given a 6 month prognosis and when I checked his behind, I did not see an expiration date stamped there. So no one really ‘knows’ what this disease will bring. The power of prayer and faith and attitude goes a VERY long way, and we do have success stories on this site.

Go with God, and KEEP KICKIN’ THAT cancer.

Margaret