New member (mom with Klatskin tumor)

Dear Serena, I am so sorry to read what your Mom has gone through. Surgery is still the best option. My husband had tubes after his Whipple and an e coli infection. In fact we were visiting in Milwaukee and our 2 week vacation turned into almost 3 months! On the way back to Phoenix the tubes blew out on the plane…what a mess that was. Have you tried to give Mom some Nutritional drinks? Teddy liked the Instant Carnation Breakfast best especially the vanilla, and I would blend in a banana. This can be given anytime and can replace a meal or be given with a meal. Give her very small portions as the eating habits have changed until she heals. Nothing fried or spicy. I would make a scrambled egg and toss in some shredded cheese. Homemade chicken soup and comfort foods like pudding, jello, buttered noodles etc. We suggest instead of big meals to let her graze on things all day like snacking. I sure hope she will start to feel better soon and remember she went through a huge major surgery. Be strong and you are NOT alone.

Hello Lainy and thank you for the warm welcome! YIPEE is right and I am very grateful that my mom was able to have the surgery. She had a left hepatic lobectomy and roux-en-y. She was seen at Keck Medical Center of USC in Los Angeles and our doctor is Robert R. Selby. He has been an amazing doctor and his team is just as great. They have not referred us to an oncologist yet because they said they wanted my mom to recover from the surgery first.. Her surgery was on 7/11 and due to multiple complications she remained in the hospital until 8/12. Poor mom, she suffered a lot. A few days after her surgery she developed a bile leak and interventional radiology had to place a drain to remove the excess bile. A few days later mom developed an infection from her PICC line.. on top of that she also suffered from an ileus and had to have an NG tube inserted twice. Another week later my mom got another infection from the bile leak. They said the bile leak was also aggravating the stomach and contributing to the ileus. We are finally home and mom is still in recovery mode. So as of now we do not know what the next steps are. These discussion groups are helping me gain some insight. I feel comforted knowing that I am not alone, but at the same time I feel sad that there are others who have gone thru this.. My mom’s recovery has been a roller coaster as she is not back to her old self yet. I miss her smile and her vivacious energy. I thought being back at home would make her feel better but I see how anxious and depressed she is.. Her appetite is a major concern right now.. she does not want to eat much and she’s worried she will never get it back.. and of course she is extremely tired all the time. I’m still searching on this forum to see if others had experienced the same thing. If anyone can give me some insight as to what recovery will be like for the next few months, I would really appreciate it. My mom also still has her bile drain in.. I’m wondering if others went home with it to and how long did it take before they removed it?
Of course, I will also do my part and continue searching previous threads It is really nice to know there is a group of people who are open and willing to share their experiences, thoughts, and advice. I hope I can contribute to this group and help others as well.

Serena

Hey Sirena, I’m very sorry to hear about your mom. Your situation sounds awfully similar to mine.. my mom was diagnosed in June after onset of jaundice. She was able to have surgery on July 11th, but prior to that she also had to have a stent placed to relieve the jaundice and decompress the bile ducts. they wanted to leave the stent in for two weeks before her surgery but her CT showed that after a week of having the stent in, her bile duct was still very dilated and not decompressed enough to have her fit for surgery in the upcoming 5 days. So she was admitted immediately to have a percutaneous stent placed in for 4 days and then proceeded with surgery. Her surgery was exploratory and doctor said there was a 40% chance that she would open her up and close her back depending on how involved the tumor was with surround organs and blood vessels. After 11 hours in OR, my mom had a liver resection with bile duct reconstruction.

Sirena, I know how difficult it can be waiting and watching your mom have symptoms of this disease and be so unsure about what will happen next..it is awful and I prayed everyday for strength to be positive for my mom. Reading and researching online did not help at all because instead of becoming more knowledgable about CC, I Just became more and more discouraged and upset and would cry nightly. I wish I had known about this forum back in June. This is actually my first post here as I just stumbled upon this site last night. It seems as if there are many supportive people on this forum and you should not feel alone as I did for the past two months. My mom is my best friend and it is so hard to see someone you love so much go through this terrible disease. I’m glad to hear your mom doesn’t have other symptoms other than the jaundice. The yellowing will eventually improve as her bilirubin levels go down. I’m praying that your mom is able to have the surgery and that she continues to not feel any discomfort. You have to continue to stay STRONG for your mom. The last thing she wants is to see you worry and be sad.. And I know how hard it is to act tough and be positive in front of your mama, but the last thing you want for your mom is to also have to worry about you. Give her the confidence she needs to get thru this. Tell her you love her endlessly.

How is your mom doing now? Your post is the first one I’ve read since discovering this site. Your mama is in my thoughts and prayers.

Serena (yes, my name is the same as yours).

Sirena –
Sorry I am getting into this a little late. My husband was diagnosed in May 2013 with Klatskin’s tumor. It was only diagnosed after he turned so yellow he looked like someone had colored him with a yellow highlighter, even his eyes. He thankfully has had no itching at all. His bilirubin levels got pretty high just before surgery so they put an external stent in to drain off the bile. To be honest I have no idea if it worked or not since he had complications that landed him in the hospital 48 hours after it was put in. He had surgery 4 days after it was put in then they took it out a month after his surgery.
He has not had a lot of pain with this. He one in awhile had some pain like his gallbladder was going bad but never enough for me to even make him go to the hospital.
One thing that can help breakdown the bilirubin is exposure to sunlight. When we deal with babies that have high bilirubin right after birth we put them in the sunlight to help break it down and lessen the jaundice. We did that some with my husband before his stent. Not sure how much it worked but I am sure it didn’t help. Also make sure she is drinking plenty of fluids to help flush it out.
Hope things go well.

KrisV

Sirena,

Worrying doesn’t help, but of course we do. It would be so wonderful if we could just turn off feelings that we knew weren’t helping, but I haven’t mastered that talent yet and probably never will.

At first when Mom was diagnosed and surgery was unsuccessful, I thought we needed a miracle.
However, your speaking of “mercies” I see as small miracles. We have had a bunch over the last year.. when tumors shrink, or even stable, or when a loved one can tolerate chemo and keep up a good quality of life… I am saying maybe we are getting those little miracles.

However, Big miracles and a cure would still work for me as well. I wish for you at the least, many of those mercies and small miracles.

Take care,
Catherine

Sirena,

Not everyone gets pain at any points with CC and when my dad had the jaundice when he was being diagnosed he didn’t have pain then. Not everyone gets jaundiced and not everyone gets pain either. Yes there is no point in worrying about something that may or may not happen in the future as that will just sap your strength right now and you need to keep that for your mum right now. And even if pain does become an issue on the future there are a ton of treatments and meds that will be able to help with that at the time if it arises then. Stay strong.

My best to you and your mum,

Gavin