mlepp0416

Andie: When my husband Tom was diagnosed with his inoperable tumor in late Nov ’09 he had just started turning yellow. The first place it is noticable is in the eyes. The whites of the eye turn yellow before anything else. At one point his bilirubin level was 24.7. Tom was lucky in the aspect that he had no itching and no brain confusion. They wanted to get a internal stent into the liver, but to date that has not been possible, so instead he has an external drain to drain off the bile that can’t get past the tumor.

You are correct, that this CC is like a roller coaster ride. You will have many hills to climb and many twists and turns in this journey.

You should ask for a CTscan or an MRI and that should show if there is a tumor blocking the bile duct. Then perhaps an ERCP is in order to see if they can place a stent which would then allow the bile to flow into the intestine. That should help lower the bilirubin level.

You may also want to seek a 2nd opinon if you are not getting the answers you seek.

Go with God, and KEEP KICKIN’ THAT cancer.

Margaret (My husband and Cholangiocarcinoma)

Rick:

Tom has been on the pill form of Xeloda and has had no side effects….no hair loss and he tolerated it very well….5 pills in the am and 5 pills in the pm. So far it has worked well for him. The nice thing is that he didn’t have to travel to take chemo. Each prescription was about $1,500 so it’s substantially less than the drug your doctor was thinking about.

As far as insurance companies go, they will deny any drug that is considered ‘experimental’ and from the sounds of it, there simply is not enough data with this drug and that may be why the insurance is denying it…most likely they are denying it as ‘experimental’.

As I do in my daily job as a customer service rep for a large health insurance company, you ALWAYS have the right to appeal any decision. But if they are denying it as expermental, an appeal will not be approved UNTIL the drug has been approved by the FDA, etc…

Whatever the choice, I’m keeping my fingers crossed for you and sending loads of prayers your way.

Go with God and KEEP KICKIN’ THAT cancer.

Margaret

Andie…tears of hope and joy are ALWAYS good….I’m glad the doc agreed on the absence of the expiration date!

Margaret

Andie:
Welcome! All I can say is when a doctor comes up with a term for life, such as 6 months (as in my husband’s case) or 11 months as in your dad’s case, it generally means that they really don’t have a clue! My husband Tom’s ‘old’ oncologist told us that radiation and chemo were not an option and that he should just go home and get his life in order.

Needless to say, we did not accept that and sought 2nd, 3rd and 4th opinoins. Although each opinoin agreed that his new tumor was inoperable because of it’s location, the last three disagreed with the no radiation and no chemo. Tom has had 28 radiation treatments and three rounds of chemo and his new tumor is dead, his tumor markers have come down drastically, as has all of his other numbers including the Alk Phosphate level that was 10 times elevated. Tom is now in his 7th month and still going strong! He does have an external drain bag to drain the excess bile from his system and to keep his bilirubin level within normal range (because the ‘dead’ tumor is still blocking the bile duct) but other than that he is doing almost all the things he did previously.

I’d bet that if you pulled your dad’s pants down and checked his butt you would NOT see an expiration date stamped there! Only God knows when our check out time is. The doctors are only ‘practicing’ medicine!

So, my advice to your dad is to continue living his life as normally as he possibily can, never take no for an answer but instead ask what else can we try? Think outside the box, do your research, ask all the questions that you can, get second opinoins. Make sure that you have a doctor who has experience with CC. Many if not most doctors have never encountered CC before therefore they do NOT know how to treat it or what to expect! The first doctor that wanted to do Tom’s liver resection had never encountered CC before, and had only done about 20 resections for other types of liver cancer. Needless to say we found a doctor who had done hundreds of liver resections and allowed her to preform the surgery.

If surgery is not an option, then you need to be discussing what others options there are.

Go with God, and KEEP KICKIN’ THAT cancer.

Margaret (My husband and Cholangiocarcinoma)

This post is for Beth O. Beth, actually bile should have almost no smell. If the bile is starting to smell, that means an infection is starting. Tom had an external stent for 7 1/2 months after his initial resection and one of the things we had to watch out for was if the bile started to smell. (never happened) if anything the bile should have a slightly sweet smell. This past month with Tom’s now 6 month old external drain, the bile started to smell and it was putrid, and the first thing the doc did was a tube exchange and put him on Levaqin (antibotic) right away. Now the bile is back to it’s sweet smelling self.

Margaret

Kristin:

I’m very happy that you have decided to make the trip to Wisconsin to see your grandma! That is awesome. I agree, you can be ‘leaky’ here or there, it makes no difference, it is what it is!

Tom is about 6ft, 117 lbs. Very skinny. But with the bile leaking out of the hole the doctor decided to go with the larger 12 guage tube. The extra holes (that the doctor modified himself) just allows for more bile to go through the tube and not follow down the outside of the tube which means bile leaking out of the wound in the side. Since they have done that Tom only has leakage when flushing the tube.

I don’t know what your ‘size’ would have to do with the larger drain tube, but when they suggested it for Tom we were all for it, if it meant not having bile leak all over everything.

Remember the bleach for getting bile out of clothes. I discovered that bleach would work one day by draining his bile into the sink and adding bleach (just to see what would happen) and wonder of wonders, it turned the bile into clear liquid! Therefore I knew that bleach would take the bile stains out of sheets, blankets, clothes! No more bile stains in this house.

The home-made bandages made out of depends or diapers work well too. They absorb more than gauze pads! Sometimes you just have to be inventive!

As a side note, it may be just a matter of time too for the ‘path’ that the drain tube takes to start to close up on the drain tube. (that never happened in Tom’s case) If/when it happens you will notice less and less leakage. (I’m hoping it happens soon, for your sake)

Go luck, keep us posted and let me know how the new bandages work. Remember to build a slot in them so that the drain tube has a place to go. I always cut a large square then cut one slot down to about the center, taped all the edges, place that over the wound with the tube in the slot. Then tape it up!

Go with God and KEEP KICKIN’ THAT cancer.

Margaret

Kristin:

My husband Tom had a lot of leakage with his drain tube at the onset. One of the main things is to keep the site as clean and as dry as possible. Tom’s interventional radman who initially inserted the drain was concerned about the leakage because bile can do a number on the skin. After about 6 weeks, he went to a larger drain tube and added additional holes to the part of the drain tube that was in the liver. (I think he said the tube he now has in is a number 12 tube) Yes, it is a 12 gauge drain tube.

Since then the only ‘drainage’ that we have is when I flush the tube (1 or 2 times a day) otherwise the site stays dry. Normally we flush it 1x a day unless he starts getting sludge in the bag, then we flush it 2x a day.

Yes, changing the dressing is a chore, but I look at it this way, Tom is still here with me, and although he hates the drain bag (probably as much as you do) it’s a small price to pay to still have him here. I’m certain that your loved ones feel the same.

As for the bile ruining clothes, all I can say is to invest in some white t-shirts. And if the bile gets on the t-shirt, bleach takes it out instantly! Pour bleach on the stain, the bile is gone, then wash the T shirt.

Before we got tegadermfilm, we used depends as bandages. We cut pieces to go over the wound, with a slit in them for the tube, taped the edges good then taped it over the site with paper tape or what ever kind of tape you have. The plastic from the outside of the depends stopped the bile from leaking all over his clothes and all over the bed. (It worked!) And if you don’t have any depends, a baby diaper will do the same thing.

Or see if you can get some Tegadermfilm. It’s expensive, but you put your gauze on, I use one 4×4 folded in half and half again under the tube up next to the stitches (bottom side of the tube) then take another 4×4, folded in half and in half again and place that over the top of the tube and stitches, making sure you cover the wound, then place the tegadermfilm over that. In your case, you may have to use more gauze unless you can convince your interventional radman to exchange the tube for a larger gauge tube, modified with more drain holes as they did in toms case. (Ask them to do that!)

Tom has had the external drain tube since december and so far his doctors are very pleased with the look of the wound and at how clean the site is, no damage to the skin at all.

Good luck Kristin. And I think you need to take that trip to Wisconsin to see Grandma. Where does she live?

Go with God and KEEP KICKIN’ THAT cancer.

Margaret