mlepp0416

Dave: You don’t really have to ‘say’ anything. Actions speak louder than words. Just be there for him, let him know you love him. Spend time with him and be supportive for him and his family.

Hugs,
Margaret

Chelle:

Gross intraheptic duct dilation means that there is a narrowing of a bile duct in the liver. This could be from a tumor, cyst or sludge and if they do an ERCP (which they did for my Tom) they can then see if it’s sludge, and if so they can clean it out and would probably still place a stent. If it’s a tumor closing it off they can probably place a stent (which they initially did for my Tom) and also they will get brushing’s to test for cancerous cells. If it’s a cyst they would remove it if possible.

Gall bladder removal is not a risky operation. I have had mine removed and went home the next day. Recovery from that depends if it was done via a lap procedure or the old conventional way (longer incision). Regardless the recovery time to be back to normal is about 5 weeks.

Infection levels are generally determined by the white blood count. Anything under 10,000 is considered normal. When that count is over 10,000 then they will start iv antibotics.

If the blockage is determined to be a tumor, and surgery is a viable option, then it’s possible that they may consider a liver resection, but that would depend upon the placement of the tumor and if the liver artery is impacted. Tom was able to undergo a left liver lobe resection for his inital surgery. However 18 months ago he presented with another tumor that was wrapped around the hepatic artery so could not have surgery. He underwent radiation and chemo which killed the tumor. They could not insert a stent because between the tumor and the radiation, that portion of the bile duct was destroyed. He now has an external drain to keep his bilirubin at more normal levels.

I know the waiting for test results is awful and scary, but if your mom is in the hospital, then I’m certain that her docs are doing all they can to find out the source of her higher than normal liver function levels.

hugs,
Margaret

Hi JC:

I would tend to disagree that Ascites is an ‘end stage’ symptom! My husband Tom has had one episode with Ascites and it is caused by a lack of protein in the system, thereby causing the arteries to ‘leak’ fluid into the abdomen. That is your bodies way of trying to compensate for the lack of protein! The doc’s drained the fluid and he has not had any further issues with Ascites. However, we did greatly increase his protein intake – eggs, cheese, peanut butter etc. You should be able to research the web for foods that are high in protein, and don’t forget Boost or Boost Plus….that is also high in protein.

Tell your special ‘US’ mom that she should join this forum as she will gain a lot of friends and will get some answers to any question that she posts! Everyone on this site is wonderful and we all learn from one another!

Many CC patients cannot eat ‘regular’ meals, so instead tend to eat many smaller meals througout the day. When my husband Tom finds a food that he can tolerate, he tends to eat that same food 2 – 5 times a week. Lately it’s been poached eggs and toast! However, I’m not complaining cause eggs are high in protein and he needs the protein. There are many foods that he used to love but his system can no longer tolerate it. He avoids all spicy foods lately because he gets an upset stomach, so it’s just better to avoid those spices!

And when your MIL can’t tolerate foods, try a milk shake made with Boost and a banana!

Go with God and KEEP KICKIN’ THAT cancer!

Margaret

Lainy:
I have no advice to offer you on this, but know that Tom and I are thinking of both you and Teddy. Our prayers are also coming your way.

Hugs to you both!

Margaret & Tom

Andreah:

Hrumph! Doctor’s cannot ‘estimate’ how long a person has to be on this earth! Case in point, just about 13 months ago, the oncologist that my husband was assigned by the Veterans Administration told my husband Tom that he had a new inoperable tumor in his liver and that he had 6 months to live. When I questioned him about Chemo/radiation, he said that Chemo and/or Radiation were not an option. We did not listen to that, and sought 2nd, 3rd and 4th opinoins. Thank heavens we did!

He did go through radiation and oral chemo (pill form) and the tumor is dead. Granted he now has 5 new tumors and a mass in the pelvic area, and he is now undergoing IV Chemo…but his new oncologist is extremely optimistic that they can help him. After all NO ONE HAS AN EXPIRATION DATE stamped on their behind!

As we enter our 13th month of life after his dreadful 6 month diagnosis we have learned to never give up, ask what else can we try, never take no for an answer and keep being optimistic. Look forward to the future and don’t give up hope. Make certain that the doctors and oncologist that are treating your Mom are familiar with CC or that they are consulting with other doctors that have had experience with CC! Tom’s new oncologist consults regularly with doctors from St. Luke’s in Milwaukee and they also discuss his case with a weekly tumor board to get information….so rather than him having one doctor he has a team of doctors involved in his treatment.

The road your mom will travel with CC will have a lot of bumps, twists and turns, but she could still be here 2,5 or 10 years from now because they are learning new things every day about CC. The best thing for you and your mom to do is to educate yourselves about CC, and this forum is great for that. Write down your questions so you will remember them and ask her doctors. And they should take the time necessary to fully answer your questions, after all they are working for your mom! When Tom was originally diagnosed in Mar. ’08, I had a two page list of questions. The first doctor that wanted to do the initial surgery appeared to be a bit ‘put out’ that I was asking so many questions and he did not give me any ‘warm fuzzies’ so we sought a 2nd opinoin. The 2nd doctor took the time to answer each of my questions, did not rush us and in fact, I think that appointment took about 2 1/2 hours because she explained everything to us. She did the surgery and was awesome during his three week stay in the hospital. The first doctor was appalled when I called him and cancelled the surgery, and 5 minutes after my call, he was on the phone to us wanting to know if we were going to reschedule the surgery. He was very upset when I told him ‘no’ and that we were going with another surgeon outside of the Green Bay area. (Hummm, no new car for his wife in ’08)

But, my thought is that if you don’t trust the doctor, why would you let that doctor cut out over half of your loved ones liver? You gotta be able to put all your faith in that doctor, and frankly I could not do that with the original surgeon who planned to cut on my hubby.

So don’t give up hope! Build some happy memories with your mom. Take one day at a time. There are many CC Patients on this forum that have outlived their doctors predictions of how long they will survive.

Go with God and KEEP KICKIN’ THAT cancer.

Margaret

My Tom is constantly ‘cold’, and I know that it’s because he has no body fat at all, therefore he cannot regulate his temp like I do. I have more than enough body fat and have offered him some of mine!

We have a gas fireplace in the great room that is on almost constantly, and in the living room we have a regular wood burning fireplace that has a fire in it every day! Plus he has the thermostat set at about 75, but with both fireplaces going it’s never less that 80 in here (unless it’s in the early morning when we first wake up!)

I sleep in very light pj’s with no covers on me and Tom sleeps under an electric blanket, then the sheet, a quilt and a heavy comforter and is bundled up to his neck.

If your dad is ‘shaking’ and complaining that he is ‘chilled’ when no one else feels cold, that could be a sign of an infection starting. Chills is one of the things that we have to watch for with Tom. You may want to at least let your dad’s oncologist know about this so they can get some blood work and checked the white blood count – they will be able to tell if there is any infection present!

Go with God and KEEP KICKIN’ THAT cancer.

Margaret