My grandmother Dg. Klatskin tumor
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Hi Xepalomero,
I have been following your posts and have nothing to add to the good info you have been getting from the others, but wanted to add my welcome to the others and add that I too feel she needs to be seen as soon as possible. Do let us know how it goes.
Darla
Hi Xepalomero,
I would also recommend getting your grandmother seen by a doctor as this temperature could be a sign of an infection. Lainy, Xepalomero is in Croatia from the first post.
Let us know how you get on.
Gavin
xepalomero…….it is not uncommon to get infections from the stent. She does need to be checked and through LABS they will find out what is causing her temperature. Let us know how she is doing after. May we ask where you are located?
Oh my, I was in such a good mood, I talked to my grandma on the phone today, she said she was fine, … the only thing she mentioned during our talk was that she couldn’t eat today…
Now my parents have called me, told me that she suddenly got 38.5C (101.3) fever!! My mom wasn’t sure what to do, so I told her she shoud get her to the doctor as soon as possible…perhaps even to call the emergency… What’s happening? Any clue? She was fine until just now. Cholangitis? Sepsis? (Two weeks after stent placement).Hi Xepalomero,
Thanks for giving us an update on your grandmother and I am glad to hear that he was quite optomistic. I just want to echo Lainy’s comments about how you are doing all the right things in seeking treatment options for your grandmother and doing an excellent job with her care. And again, I agree with Lainy in that you will feel better once a treatment plan is in place and you feel that you are doing something to fight back.
My best wishes to you and your gran,
Gavin
Hi xepalomero. I find that doctor visit to be well worth it’s while. Good news, actually. I have one thing to say about Cyber knife. Why go through weeks of radiation when 3 days of CK will do the deed? Chemo has more side effects and it takes longer. The important thing is he didn’t rule it out by saying it won’t work for her!!! You are doing all the right things and in just a short time have become a stellar advocate. Never was sure about slow/fast growth of CC. It may depend on the location and the condition when diagnosed. Teddy’s tumors seem to be slow in growth also and he is 77. Keep up the good work and soon you will have a plan and that is the best feeling as you know something is finally going to be done. Keep us posted and take care of yourself.
I finally had an appointment with the other oncologist. He was quite optimistic (well, relatively), he said that he wouldn’t expect the tumor to grow rapidly(mainly because of my grandma’s age) and that , considering the fact that the tumor mass wasn’t visible neither on her CT or on MR scan, it had to be rather small and localized, so he said.
He recommended a combination of chemo- and radiotherapy. ( We still don’t know if such a combined therapy will be offered to her by her hospital oncologist, so we’ll see what to do after her check-up in the hospital next week).
He suggested it would be much more appropriate for my grandma to take Xeloda pills at home (instead of 5-FU that has to be administered intravenously in a daily hospital, which in her case would mean 1,5 hour drive every day to the daily hospital and back, for, I don’t know ..two weeks or even more..) I asked him about the possible side effects and how to prevent them, and he said that they’re usually mild for a small dose of capecitabin so we don’t have to worry about that…
I couldn’t resist bringing up cyber knife therapy during our conversation…He said he basically has nothing against it but thinks that the classical radiotherapy would, in her case, probably show similar effects – still, I’m not so convinced about that…so I’ll keep collecting additional info). He confirmed that megestrol acetate would help her gain appetite and (hopefully) some weight so we’re getting it first thing next week…
In the meanwhile my grandma’s fine..no pain, no sickness, no chills, no jaundice. She’s still weak, her apptite’s still poor. Yesterday she was even out shopping and at the hairdresser’s…
She asked me (she always asks ME because I’m her “doctor” ( I’m a dentist ) about all sorts of things that concern her “new” illness) should she be lifting heavy objects or bending over and stuff like that because of her stent? Should she be worrying about making some wrong move in fear it might get displaced? I wasn’t sure what to say (probably it’s impossible to effect the stents from the outside (just by moving), but I’m not 100% sure)…..Hi Xepalomero,
Welcome to the site although I am sorry that you find us all and I am sorry to hear of your Grandmothers diagnosis. And yes you are so right in that it is great that we have this place to come to where we can meet and talk with others in the same situation as ourselves.
I came here back in 2008 when my dad was diagnosed with inoperable CC and everyone here helped me so much and I know the same will be done for you, so please keep coming back as you will get a load of support and help if we can. The first we knew about my dads CC was when his jaundice appeared and then he was taken into hospital, had all the tests and 3 weeks later we got the news that we wdidnt want to hear. He had a metal stent inserted and underwent Photodynamic Therapy PDT as his treatment. He wasn’t suitable for surgery or radiation so he had the PDT.
I can’t help you with your questions regarding chemo as he never had that, but I am sure thatr others will be along soon that can help. Please keep us all up to date with everything and I hope you get some good news from Thursday’s meeting with the oncologist.
My best wishes to you and your Grandmother,
Gavin
Dear Lainy, thank you for your warm welcome! To be honest, I was really surprised to see that someone has replied to my posts
Welcome, xepalomero. I hope you’re getting more information from the oncologists now. How did the second opinion go? Any more news?
My very best wishes to you & your grandmother.
I am really doubting whether the Dr’s have enough evidence to diagnose this is a Klatskin tumor. Certainly the stricture seems suspect, but was there any biopsy or cytology done on it? Strictures can be benign (as your research mentions!) and I’m suprised that the Dr’s are convinced that this is cancer with the lack of other evidence. The elevation of tumor markers CA 19-9 can be elevated in ANY kind of blockage and the gallstone certainly could be the cause of this.
I think it would be prudent to have a confirmed biopsy and re-evalute CA 19-9 levels after the obstruction has cleared for a week before starting on a chemotherapy regiment. You would hate to let your grandma go through chemo if the Dr’s were wrong!!!
Best of luck to all of you.
Rick
Dear XEPALMERO, welcome to our Family. My goodness I think you are our first member from Croatia! Indeed, welcome. Grandma’s are so special, yes?
I have to be brutally honest here and say that I am not sure I would put anyone at 85 through too much upset. You are doing all the right things and am so glad to hear that you are seeking another opinion. You might want to ask about Cyber Knife, not sure if you have it there. My husband had it and it is a Miracle. It is a type of laser that goes right to the spot and in 3 days the cancer starts to shrivel up. Done! The only thing is the tumor must be under 7 CM and there cannot be a lot of tumors involved. My husband may be heading that way again. It is actually taught in Oslo as our Radiologist went to learn there. Please let us know what the new Oncologist says and please keep us advised.Her MRCP showed no signs of tumor mass , only a 1,5” long stenosis (stricture) near the bile duct bifurcation. No signs of tumor mass in liver too (US/CT/EUS/MRCP), no elevated ESR, no abdominal pain. Mild jaundice combined with elevated liver enzymes…is that really enough to diagnose Klatskin tumor? Maybe I’m just having false hopes, but I’ve been reading some scientific papers on this subject on PubMed and some studies have shown that postoperative PHD-s show up to 15-16% benign lesions among all those who have been diagnosed with Klatskin tumor. ?
Today I spent a whole day with her, talking, actually trying to make her eat more… since she came back from hospital she eats three times a day but I think it’s still not enough. She has started drinking the tahitian NONI juice, Omega 3 fatty acids (purified fish oil), we’re adding some additional proteins to her meals (egg whites, meat). I made a suggestion to her GP that she should perhaps try to improve her appetite by prescribing her megestrol acetate (sold as suspension Megostat here in Europe) but she has refused to do so, saying that Megostat suspension is only for those who have lost much more weight (???? and my grandmother has “only” lost 35 pounds!!!! ???). She also said she is uncertain how it would effect her condition, generally because it’s a hormonal medication with some side effects, even if she hasn’t got even one of all the contraindications listed for Megostat. I would appreciate it a lot if I could get any information from any of you who have been taking megestrol acetate— how did it effect you, your appetite, how were the things with side effects…basically has it worked for you….would you recommend it to others…..
Tomorrow I’m seeing another oncologist for a second opinion on this matter…
i feel as if i’m trying to just buy her two or three more days…it’s desperate….My grandmother has recently been diagnosed with Klatskin tumor. She’s an otherwise very healthy 85yo and the only symptoms she had were milde jaundice and some weight loss during a longer period of time (last 6-10 months). During her stay in our local hospital she has undergone several diagnostic procedures such as endoscopic ultrasound (it didn’t reveal any signs of tumor presence, only a gallstone present in her common bile duct), then the CT (CT image was also negative for any kind of suspect mass). After EUS and CT images have been done, doctors decided to send her to ERCP during which a surgeon would have taken the “gallstone” out of her bile duct. However, the surgeon was unable to get it out and his opinion was that there has to be something else to it than just a gallstone. After the ERCP she was sent to MRCP that revealed a 3cm long (irregular) stricture of the common bile duct in proximity to the hepatic ducts / bifurcation. No spreading to liver was present…
And, her tumor markers were positive, but at first the doctors were saying that such finding could be connected to some sort of chronic pancreatic inflammation. After the MRCP, a stent (a plastic one) was successfully placed into her bile duct. Her bilirubin levels are now dropping, she feels well, she eats, walks….like before. The doctor said he would wait for another two weeks for her bilirubin level to drop as much as it can so that they could start the chemotherapy. He’s mentioning some sort of surgical therapy in the future but it’s all…maybe we’ll see…probably because of her age) I’m aware that her condition is very serious (and that death, unfortunately, is the only possible outcome) but I’d like to do as much as I can to reduce her suffering in the next stages of her illness. My questions are : would it be possible to use oral chemotherapy (pills such as Xeloda -capecitabin / available here in Croatia, but mostly used for colon and breast cancer here) for treatment of this type of tumor instead of classic 5-FU IV ?? What kind of dietary supplements / vitamins / anything else would be recommendable for her condition (before, during and after the chemo)?? Should I ask her GP to prescribe her some antiemetics before the beginning of her chemo (5-FU) treatment?? What else would be efficient in reducing chemotherapy side-effects?
Any advice is more than welcome!
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