New member (mom with Klatskin tumor)
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Hi Sirena,
Thank you for the response. Please ask questions and still be hopeful even if it has spread. What treatment center do you go to?My mom was recently diagnosed, so I am in the beginning stages. Currently I am looking into treatment centers such as City of Hope. She is not a candidate for surgery, and I don’t feel comfortable even if she was. She is too weak to get surgery so I am looking for alternative treatments. She is also not a candidate for chemo. My mom also has stents in her bile ducts and will need them replaced in two months. There is a lot to learn and manage. Do you think the stents are causing the problem or pain? Did her CC start in both left and right ducts of the common duct?
All the best again.
Hi, Sirena, so sorry to read about your Mom. My Teddy also had CC go to the Duodenum but the DUO was removed with his Whipple surgery. Has your Mom sought out other opinions on treatments? Hoping for the best for Mom and for you!
Hi positivity,
First of all, so sorry to hear that your mom has a Klatskin tumor and that she had such a bad experience with an incompetent doctor. I hope she is in better hands now.
It’s been a while since I last logged on. Unfortunately, things have gotten worse for my mom. A tumor was found in her duodenum, causing her pain and difficulty when eating. She had a stent put in but still has trouble. On painkillers and has lost a lot of weight. I fear that things will only get worse and don’t know what I can do at this point. Would appreciate hearing from anyone who’s in or has been in a similar situation.
I wish you and your mom all the best, positivity. Staying positive in such tough times isn’t easy but don’t lose hope.
Sirena
Serena,
My Mom has Klatskin Tumor and had a bad ERCP the first time due to:
1. The doctor didn’t take adequate samples for biopsy
2. The stent placement was either misplaced or moved
3. Caused her bilirubin to elevated very high
4. Experienced bad jaundice, more so than before procedure. She hardly had jaundice before procedure, slight yellow in eyes , but nothing alarming.
5. Caused mild pancreatis which needed to subside before another GI doctor having to redo the job.This was frustrating and made my mom weaker by prolonging her hospital stay. Not all doctors can perform ERCP, and we got a incompetent one, otherwise another GI doctor would not have to redo procedure. It made my mom worse, Before her ERCP she had a bilirubin of around 3.5, and after the procedure it went up to 15!!!! NOw after the second ERCP, it’s back to normal around 3 (although considered high, normal for her) Unfortunately, the ERCP was necessary for a biopsy to get a diagnosis. I am still questioning if stent placement was necessary, as the first round made her worse, and it was replaced.
Sirena,
Very happy for you and your mother. And, yes it is a balancing act that never seems to be easy.
Best wishes that all continues to go well,
Catherine
Sirena, good news as sometimes going for a dose of home can really be a big boost to feeling better. Wishing you the best and please keep us updated on Mom’s progress.
Mom no longer has stents after her resection. Thankfully, she’s been discharged from the hospital and she’s doing better now. She’ll finish her radiotherapy treatment and be given chemo only if her health improves. Thank you so much for replying. Am trying to stay optimistic and realistic at the same time. Admittedly, it isn’t always easy!
Sirena….we have reports of nausea, diarrhea follow and extreme tiredness following radiation. Perhaps someone else can chime in on your question?
Most likely they will run a culture for determination of the bacteria causing the fever. Try to relax, they will have answer.
Hugs,
MarionDear Sirena, does your Mom have stents in the bile ducts? If so many time the fever is from the stents being clogged and then they need to be exchanged and the patient gets a very quick turn around for the good. Not sure if RT can cause a fever. I know this is all 100 times harder not being able to be there. Perhaps you could make a list of your questions and have your dad ask the Doctor?
My mom has now been hospitalised after developing a fever. She is still having radiotherapy. I wonder if the fever is a side effect of radiotherapy. Does anyone know? Thank you in advance.
Thank you for replying, Lainy and marions. My mom is in Hong Kong. I, however, am not. My dad takes care of her and all I can do from afar is Skype with them and hope she’s getting the best treatment possible. I’ve been reading up on Klatskin tumor related posts here but it’s depressing that the survival rate for this particular cancer is so low. I guess I just have to be realistically optimistic as I’ve been told to but it’s difficult. Thank you again for your support though. I feel less alone.
Dear Sirena, Can you speak to your Mom’s ONC to find out why no Chemo? If I may make another suggestion, I would call your own DOC and ask him for something mild to help you get over the edge of feeling helpless. The only thing you can do for your Mom is to be strong for her. You never know how strong you are until “strong” is the only choice you have! Please let us know how Mom does on her new therapy. Hang in and hang on and know that we are here for you!
Hello everyone,
After a successful operation to remove the Klatskin tumor in October 2014, my mom’s cancer has recurred. She’s currently having radiotherapy and having some tough days. After having blood tests done, she won’t be offered chemotherapy. I’m not sure why, but wonder if it’s because her general health is considered too weak or potentially worse…? I’m afraid I’m falling into depression at the thought of losing my mom and don’t know what I can do to support her.
Sirena
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