mlepp0416

All I can say is that when Tom’s tumor markers were normal he had no issues. Both times CC was detected, it was the tumor markers that showed that there was something wrong…

Margaret

Scarman2008:
I agree with Lainy! Tom’s CA 19 is 336, down from 466 three weeks ago and his bilirubin level is 22.7 down from 24.7 three weeks ago. He is currently undergoing radiation for her reoccurance of a CC tumor 20 months after a left liver lobe resection.

Never give up! Keep a positive attitude! No one has an expiration date stamped on the bottom of their feet or on their butt!

This wonderful site has given me a lot of information and helps me to maintain a positive attitude – even on those days when being a caretaker to a very sick husband gets me a bit down.

Prayers from Wisconsin coming your way.

Go with God and KEEP KICKIN’ THAT cancer.

Margaret

Jen and Lu:

Welcome to the site, you will find a lot of answers here but no one truely wants to be a member of this site.

In my husband Tom’s case, we dealt with the Veterans Hopsital in Iron Mountain. The first indication that there was something wrong was based on blood tests were his Alk Phophaste was 10 times normal. All they wanted him to do was discontinue some meds, then come back in a week for more blood tests, then use a special diet, then come back in a week for more blood tests…after about 4 weeks of that garbage, I took matters into my own hands and go into a civilian doctor and within 2 days an ERCP was scheduled, they could not get through the blocked bile duct, so the next day they introduced a wire from the chest wall and via the ERCP there were able to stent the site of the original tumor, they did a brushing of the bile duct where cancer cells were found and they immediately identified it as CC. That was in April of 2008. Tom was a candiate for surgery based on where the tumor was (Left lobe of liver about 1 1/2 CM from the junction between the left and right biliary tree. His original tumor was about 1.5 CM. Tom had a successful resection but had a tumor reoccurance in November 2009 in the remaining right biliary tree.

mlepp0416 is my login name and you can read Tom’s story on this site.

With this type of cancer, a good pathologist should be able to determine what type of cancer cells your dad has. You need to ask any and all questions you have. Prior to Tom’s surgery I walked into the surgeons office with my list of questions wrote down and we did not leave that surgeons office until he’d answered every question! There is no such thing as a dumb question when dealing with this type cancer.

If you don’t like the way the doctor answers those questions, then seek a second opinoin. The first doctor had only done less than 20 liver resections in a 20 year period. I did not put my husbands life in that doctors hands needless to say. We ended up going with a VA doctor that had just transferred to the VA Hospital in Milwaukee Wisconsin. She’d done hundreds of liver resections and liver transplants when she was at Froedert Hospital in Milwaukee. She took all the time necessary to explain the surgery to us, the recovery time, with no complications, the recovery time with complications. She drew up diagrams to show us where the cancer was, how she planned to cut, etc. She gave as “Warm Fuzzies” and we were very confident in her ability to get Tom through surgery successfully.

Prior to meeting with the surgeon, I was on the computer for hours looking at anything and everything I could find on this type of cancer. As questions came to mind, I’d write them down. I still do that today based on Tom’s reocurrance and now his radiation.

Given that CC is a rare cancer and there are many doctors/oncologists who never see this type cancer, it is not unusual that it’s taking weeks to get a proper diagnosis. Good luck to your dad, prayers from Wisconsin coming his way.

Go with God and KEEP KICKIN’ THAT cancer.

Margaret

Katherine, I’m not certain exactly what ‘non-pitting’ edema of the legs is, but my hubby Tom has edema of his feet and lower legs. Have the docs checked the Albumin levels? Tom’s is very low which they say is causing the edema. They can give an injection/infusion of Albumin but it’s only a short term solution. The way it was explained to us is that the fluid is ‘leaking’ from the blood vessels. In Tom’s case, his bilirubin is so high (22.7 at last blood work) that his kidney’s are working overtime to try and flush the bilirubin from his system.

The best solution they gave us was to wear compression stockings and to keep his feet elevated higher than his heart as much as possible. I also rub is feet legs a couple of times a day, this does give him some relief from the pain the edema causes. (he normally has pretty skinny feet so it’s weird to see them so bloated, in fact, they are so large now that he can’t get his normal shoes on!)

Keep asking questions and reading the posts on this site. The more informed you are the better, and remember, the only dumb question is the one you don’t ask!

Go with God and KEEP KICKIN’ THAT cancer.

Margaret

LOL, my husband Tom LOVES his external drain and bag. NOT! We thought it was gone forever when 7 1/2 months after his original resection it was finally gone. He loved it so much that we kept it and burned it in the campfire 1 years post surgery. Needless to say, he was devasted when his bilirubin level skyrockted to 24.7 this past December and they had to do an external tube and drain bag to get his bilirubin level down. (They could not get an internal stent in because the tumor is blocking everything) Come this time next year we may be having another drain bag burning!

Go with God and KEEP KICKIN’ that cancer!

Margaret

OneBigFamily:

Sorry you had to find this site, but welcome to the CC family that you will find on this site. I’m also a new member. My husband Tom has CC and underwent a successful resection in June 2008, were almost 80% of his liver was taken out. We were told that he was ‘cancer free’ – No chemo, no radiation was necessary, per the VA cancer team.

On Thanksgiving 2009, Tom started turning yellow. His bilirubin level went up to 24.7 within a matter of 6 weeks. His oncologist with the VA in Iron Mountain Michigian told him to go home and get his affairs in order.

One thing that I have learned during the time since Tom’s initial diagnosis is to never take NO for an answer. We also considered Mayo Clinic but the distance away from family and friends was something that I did take into consideration and since we were in Milwaukee for three weeks for his initial surgery I wasn’t prepared to do that again.

We did drive to Marshfield Clinic in Marshfield WI and presented to the ER (that was the quickest way I could figure out how to get into an Oncologist without waiting for an appt) We were back there in two days with an appointment. We’d brought all his records with us when we went to the ER including the latest CT Scan which showed the new tumor in the remaining right biliary tree. The oncologist at Marshfield also said his new tumor was inoperable because of it’s placement. (a 2.5cm tumor smack in the middle of the right biliary tree with blood vessel involvement). She did give us a bit more hope however, and suggested a bile duct stent or external drain to help combat the excessive bile build up in his system (which was causing his yellow color) and suggested chemo and radiation.

We also went to visit his original surgeon in Milwaukee who agreed with the Marshfield oncologist. We then presented to the Vince Lombardi Cancer Clinic in Green Bay, Wi. Dr. Rhoady (Radiation) and Dr. Nancy Davis (Oncologist) are his doctors there. The plan was to get the liver stented, start radiation and chemo.

The liver stent has presented a problem (after 5 tries, he still does not have an internal stent) but now has an external drain with a collection bag. Because the bile is not flowing into the intestines they are unable to give him chemo, however they did start radiation and as of this week after about 22 radiation treatments, his bilirubin has come down 2 points (22.7) and his tumor markers have started coming down as well. Apparently the radiation is starting to work.

You need to ask many questions, get second opinoins, don’t take no for an answer, keep asking why…this is your fight, stay positive!

Good luck, prayers from Wisconsin are coming your way.

Go with God and Keep KICKIN’ that cancer.

Margaret and Tom