mlepp0416

Donna9:

Welcome to the site where no one really wants to be a member, myself included. I am my husband Tom’s caretaker. Tom was diagnosed with CC in March 2008 and in July 2008 he had 3/4 of his liver removed because of Cholangiocarcinoma. All the doctor’s were telling him he was cancer free. No Chemo, no Radiation. In November of 2009 he started turning jaundiced. You can read more on this site about his journey under mlepp0416.

Like you we were in disbelief when they told us that he had a re-occurance of the cancer. We too asked ourselves “How can this be?” It’s a question that will most likely never be answered. Cancer is very evil and all you can do is to try to be very positive for your husband. Tom’s original oncologist gave him 6 months and told him to go home and get his affairs in order.

We didn’t like that diagnosis and sought 2nd and 3rd opinoins. Although all the doctors agreed that his new tumor was inoperable because of it’s location (in the middle of his remaining biliary tree in the rt. lobe of the liver, including the main blood vessel) two of the three strongly suggested radiation and Chemo.

Because the liver was blocked, Chemo was a no go. He has had about 27 radiation treatments and his bilirubin level climbed to 24.7. Luckily Tom did not have any side effects from the high bilirubin. Blood work today showed that his bilirubin level is now down to 9.9. So we are on the right track.

No one knows what the future will hold. Don’t give up hope. Do all the research you can, ask all the questions you can. If one treatment won’t work, ask about the next one. No one has an expiration date stamped on the bottom of their feet (or on their butt!)

Get more than one opinoin. Last of all NEVER GIVE UP. Keep fighting, keep looking and above all believe in the power of prayer!

Go with God and KEEP KICKIN’ THAT cancer.

Margaret

TK:

Welcome to the site that no one really wants to join, my self included. I am my husband Tom’s caretaker. He also has CC and underwent a liver resection in June 2008. You can read his story under my login name, mlepp0416.

You have come to the site where you will feel like you have a family, and will find many friends for support and information. Please ask your questions, ask for advice, you will get answers and support from people who have many difference experiences.

There is no such thing as a dumb question!

Prayers from Wisconsin coming your way!

Go with God an KEEP KICKIN’ that cancer.

Margaret

Hi Courtney:

So sorry that you have had occasion to join this site. It’s the site where no one wants to join, myself included. But having said that you will find many wonderful caring people on here, as I did.

My husband Tom had 3/4 of his liver removed in June 2008. Until this past November he was considered ‘cancer free’. He had a new tumor re-occurance with and inoperable tumor. Currently undergoing radiation. You can read about his journey under mlepp0416 on this site.

Tom too, developed infections after his surgery and was in the hospital for three weeks, then on long term antibotics at home for another 6 weeks. He also had a drain tube for 7 1/2 months.

Each person can be so different with the outcome of surgery.

Ask all the questions that you can. There are no dumb questions. Ask his doctors to explain (in words you can understand what is happening) Focus on making your Dad’s stay in the hospital as comfortable as it can be.

Be his advocate if he can’t/won’t speak for himself. Do all the research that you can, find out what the next steps are.

Each journey is unique and can be vastly different.

Prayers from Wisconsin coming your way.

Go with God, and KEEP KICKIN’ THAT cancer.

Margaret

Hi Tom! Sorry you have to be on this site, however you have now found the best place to be.

My Hubby, also named Tom has had high bilirubin levels for the past 8 weeks or so, his climbed to 24.7 and they were unable to stent his liver, so he currently has an external drain to draw off some of the bile. At his last blood work, his bilirubin level had dropped to 22.7. He also cannot start Chemo until the liver is able to be stented, so that the bile can flow naturally where it is supposed to be going, into the intestines.

The way Tom’s oncologist explained it to us is this. The liver is like a giant garbage dump. Anything that goes into the body (like Chemo) is sucked up by the liver. 98% of the chemo will go into the liver and the 2% will go around the body looking for other cancer cells to attack. Then 98% of that 2% will be sucked up by the liver. If he were to go on chemo while the liver is blocked by his tumor, he would very quickly reach toxic levels of chemo in his liver and that alone will kill him. Therefore they have to make certain that the bile is going into the intestines rather than into his entire system.

Since they were able to stent your bile duct you should see your bilirubin level normalize fairly quickly.

Have your docs discussed radiation with you as an additional treatment or as an alternative treatment while you cannot be on Chemo? If not, I would suggest asking them if that would be an option.

Since my Tom cannot be on Chemo right now they are doing radiation treatments for him and this alone has seemed to help. Where before he had no color at all to his stool (no bile getting into the intestines) his stool now has color (bile getting into the intestines) so this alone suggests that the radiation has shrunk his tumor. He has two more radiation treatments to go, for a total of 23 treatments in total.

Next steps for him are to try to stent the liver again (they’ve tried 5 times and failed each time for various reasons) and once that is stented, his docs say that the bilirubin level should return to normal as quickly as it climbed….Once his bilirubin level is back to normal (which they tell us are from 0 to 1.3) then he will start on chemo and radiation. (Chemo works better in conjunction with radiation so Tom’s docs say)

Prayers from Wisconsin are coming your way.

Go with God and KEEP KICKIN’ THAT cancer. Remember that no one has an expiration date stamped on the bottom of their feet (or on their butt!)

Margaret

sharpeilover:

My husband Tom has a inoperable tumor, no met to anywhere else in his body. His original tumor was resected in June 2008 and he had a new occurance of a 2.5 cm tumor in the remaining right biliary tree. “They” have given him 6 months. We are now at 2 months out and he is receiving radiation. His tumor markers have gone from 466 down to 336 and his bilirubin level has gone from 24.7 down to 22.7 at the last blood work.

No one has an expiration date stamped on the bottom of their feet or on their butt.

I too am surprised that they are not doing radiation for your Mom. Without radiation Tom’s bilirubin level and his tumor markers would have continued to climb. Because those numbers are going down, we know that the radiation is shrinking the tumor and bile is now getting into his intestines (that’s a good thing!).

We are not giving up, we are fighting this and once the tumor shrinks and they can get a stent into the liver bile duct, then Tom will start on Chemo.

Good luck in your research for your mom, and as always, ask questions, seek second and third opinoins and never take no for an answer!

Go with God and KEEP KICKIN’ THAT cancer.

Margaret

Lainy,
Do you have high cholesteral (sp)? Tom also does and for years he was on ‘statin’ drugs to help lower it. But they did not help much to lower it or control it. It wasn’t until they took him off the ‘statin’ drugs and started him on fish oil that his cholesteral levels started coming down. At his last blood work, his cholesteral was 159! He takes 2,000 mg of fish oil in the am and 2,000 mg in the evening and it’s doing wonders for him! While he was on the ‘statin’ drugs his cholesteral was always between 300 and 400!

Margaret