mlepp0416

Kristin:

Wonderful, wonderful! I’m so happy for you.

My husband Tom experienced a reoccurance about 20 months after his resection for CC. I’m going to tell him of your experience. He too was told that it ‘incurable’ and ‘inoperable’ and that he should go home and make his arrangements. His oncologist gave us no hope whatsoever and told us that radiation and chemo where not an option.

We were not happy with that answer and immediately sought 2nd and 3rd opinoins. Tom’s tumor reoccurance is inoperable because of the placement and because it involves the hepatic artery. But for an oncologist to say that Radiation and Chemo is not an option was unbelievable.

Our 2nd and 3rd opinoins agreed that it was inoperable, but disagreed with the no chemo and no radiation!

After 28 rounds of Chemo Tom’s tumor has shrunk! His new oncologist agrees that she cannot ‘cure’ him but she feels that she can put him into remission and by remission she means shrinking the tumor with radiation and chemo so that the tumor is gone. Then it’s a regime of CTScans, etc watching for other reoccurances and treating them agressively like she is doing with this one. Tom currently cannot take chemo until they are able to stent his liver.

I’m so happy for you and your story will be an inspiration to Tom to keep fighting and may be the motivation that he needs. I want another 23 months and then 6 years for Tom and then we’ll start over with another 23 months and 6 years!!!

Go with God and KEEP KICKIN’ THAT cancer.

Margaret

Hi Christina;

Welcome to the best little site on the internet that no one truly wants to join, myself included.

My husband Tom also has CC, he will be 63 on this coming Thursday, the 11th of Feb. He was initially diagnosed in March 2008, had a resection in June 2008 and had a reoccurance of a tumor in the remaining right biliary tree in Nov 2009.

Tom’s new tumor is inoperable because of the placement and because it involves the hepatic artery. After 28 rounds of radiation, the tumor has shrunk but he has yet to start chemo because they have to be able to stent the liver first. You can read more about Toms journey under my login name mlepp0416. (My husband and Cholangicocarcinoma)

CC is bile duct cancer. The liver is a vascular organ, so in a round about way I guess you could say that CC is a vascular cancer. But really it is a cancer of the bile duct, so in that respect it really isn’t a true vascular cancer.

I do not have any experience with CC metastizing (sp?) to the colon, however I do know that it is possible. Before my husband Tom had his resection one of the criteria was that he had to have a colonoscopy to see if it has spread to the colon. Thankfully, his colon was clear as were his lungs and other body organs that they checked with CTScans. So far his CC has remained strickly to the liver bile ducts.

Some doctors tell us that it is a slow growing cancer, others tell us that it is fast growing cancer. Some doctors tell us that it remains confined to the liver and others tell us that it can spread. (I really think that many doctors simply do not know because so few of them have experience with CC)

Chuck is very lucky to have you as a friend. My advice would be:
1) Do all the research you can. The internet is a great tool for that.
2) Write down any questions you think of
3) Quiz Chucks doctors regarding your questions.

The first time we went to see a surgeon in Tom’s case, I had a two page list of questions based off my research, and I made the doctor answer every one of them.

I noted his answers and when we went for a second opinoin, I asked the same questions of the 2nd doctor.

I then did a comparison of their answers and we went with our gut instinct to NOT have the first doctor do Tom’s resection surgery.

The first doctor was ‘old school’ and not up on more modern techniques and he’d only done “maybe 20 in my career” whereas the second doctor had done hundreds, was 30 years younger than the first doctor and she’d also done liver transplants.

She was a great choice. And she had no problem answering all my questions and giving real human answers in terms we could understand.

Tell Chuck that prayers from Wisconsin are coming his way.

Go with God and KEEP KICKIN’ THAT cancer.

Margaret

Paul:
Welcome to the best site on the internet that no one really wants to join, myself included. You can read my husband’s story under my login name mlepp0416.

Tom has not yet taken Xeloda but we have $3000.00 worth of those little pills sitting on the shelf. If they are able to stent his liver now that the radiation has shrunk the inoperable tumor then he will be able to start on those pills.

Tom’s tumor is inoperable because it involves the hepatic artery as well. However, his bilirubin level was up to 24.7 when he started radiation treatments. They had to put an external drain in becuase they could not get past the tumor with an internal drain. After 28 radiation treatments, the tumor has shrunk and his bilirubin level is down to 9.1. They will be trying to stent his liver next week.

I can’t answer all your questions but it sounds like you are on the right track. But YES, certainly keeps asking questions, seeking other opinoins!!! As many as you need to! No one has an expiration date stamped on the bottom of their feet or on their butt!

I’m sure that there are other chemo regimes that can be used if Xeloda does not work. It’s the first chemo drug that they wanted Tom to start on and in reading posts on this site, it appears that many people are put on that drug for this type of cancer.

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

KEEP KICKIN’ THAT cancer!!

Margaret

Hi Michelle:

Welcome to the best little site on the web that NO ONE really wants to join, myself included!

My husband Tom’s Journey with CC can be read under my login name mlepp0416.

As to your question on how much time your dad really has. Well, no one knows for certain! When Tom’s liver enzymes elevated, it took weeks to get a diagnosis and we finally left the VA hospital and went to a civilian doctor who had a diagnosis with one ERCP! CC was a word that I never know until March of 2008. Tom had his rescection in June 2008 and after a long uphill battle of healing, no chemo and no radiation because his margins were ‘clear’ and he was ‘cancer free’ or so they said.

We had a wonderful spring, summer and fall of 2009 and we no longer worried about Tom and his CC. He was cured. However in late November 2009, in fact on Thansgiving day I thought that Tom looked a little ‘yellow’ and just thought that I was looking for a worse case scenario.

Two days later I asked my girlfriend if she thought he was turning yellow. She agreed. I took him to the ER of a local hospital where he had been diagnosed in 2008. A CTscan revealed a new tumor in the middle of the remaining right biliary tree.

We consulted with his oncologist at the Iron Mountain Michigain VA hospital and he told us it was inoperable, that Chemo and radiation would not work and that he should go home and get his affairs in order and that he has 6 months at the most.

We sought 2nd and 3rd opinoins. And we consulted with his original surgeon who did his initial resection. She agreed with the other doctors in that the tumor was inoperable, however, she thought that with Tom’s and my ‘fight’ that if anyone was a candidate for chemo and radiation that Tom would be the one.

We chose to stay locally for his new fight with CC. Aurora Baycare medical center has the Vince Lombardi (GO PACKERS) Cancer Center and they are wonderful. Because the tumor was totally blocking the liver, chemo was out until they can get the liver stented. All his new doctors now are saying that after a liver resection, even with clean margins he SHOULD have had Chemo to kill any cancer cells floating around and that is standard protocal for their cancer center.

The radiation oncologist that he is now seeing set him up for radiation to hopefully start killing the tumor. His bilirubin level rose to an all time high of 24.7 (normal is less than 1.3). We don’t know why Tom did not have any of the side effects of the high bilirubin levels such as intense itching or brain confusion but we are thanking our lucky stars.! Tom had a minor stroke in 2005 so that may be the reason that he didn’t get any of those side effects (that part of his brain may have been damaged??)

After 28 radiation treatments, Tom’s bilibrubin level is down to 9.1 and we feel it will go lower yet. Because of the placement of the tumor, they were unable to get the stent into his liver, so he has had an external drain for the past two months which is also helping to lower the billy level. Next week they will try to stent the liver internally. (keeping fingers crossed on that one)

On the 16th of Feb, Tom will have 23 months in since his diagnosis. The road has been bumpy and has had many twists and turns. Sometimes we feel like we’re hitting a brick wall. But we always try to keep a positive attitude and we have learned to not take a ‘no’ for an answer! We question every thing and want to know why something can’t be tried or done (and they better have a good reason!)

We fired the oncologist who told Tom that nothing could be done as there is always something that can be done or something new that can be tried. Tom will be 63 on Feb. 11th and we’re hoping that he will have many more birthdays to celebrate. We’re not giving up on this one, and neither should your dad.

Have your dad’s doctors thought about putting a stent into the liver from the outside? Tom’s tumor is 13cm from the intenstine and to do a stent via an ERCP the longest stent that they can use is 14cm else the stent bends and he would need a 16cm stent to get past the turmor. But a longer stent can be introduced from the external chest wall, it’s a dual procedure along with an ERCP. The wire from the inside goes past the tumor and the stent from the chest wall is placed onto that wire and pulled into position. This is the way they are going to place Tom’s Stent next week. You may want to question your dad’s Interventional Radiologists on this type procedure. A longer stent can be used with this technique.

Rather than focusing on the length of time your dad has, focus on spending quality time with him and build those memories, take a lot of pictures! This past Christmas we got the entire family, his children, my children, all the grandchildren and got pictures of everyone! It was awesome!

Remember that no one has an expiration date stamped on the bottom of their feet (or on their butt) and no one really knows how much time on has.

I don’t know of any cancer centers in Canada (but I do know that Canada has some great fishing spots!) Do all the research you can and ask all the questions you can!

Prayers are coming your way from Wisconsin, USA.

Go with God and KEEP KICKIN’ THAT cancer.

Margaret

Lainy and Teddy!

WHAT AWESOME NEWS! You guys just keep KICKIN’ that cancer! And keep those feet a dancin! I’m so happy for the both of you.

Margaret