1 (edited by xepalomero Sun, 02 May 2010 15:35:37)

Topic: My grandmother Dg. Klatskin tumor

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!

2 (edited by xepalomero Mon, 24 May 2010 12:12:05)

Re: My grandmother Dg. Klatskin tumor

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....

Re: My grandmother Dg. Klatskin tumor

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.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My grandmother Dg. Klatskin tumor

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

Ulcerative Colitis 1990, Stage 0 colon cancer and subsequent colectomy with J-pouch in 7/2005, PSC 7/2005, Klatsin CCA 8/2009

Re: My grandmother Dg. Klatskin tumor

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.

“When it is dark enough, you can see the stars." - Ralph Waldo Emerson

Re: My grandmother Dg. Klatskin tumor

Dear Lainy, thank you for your warm welcome! To be honest, I was really surprised to see that someone has replied to my posts

Re: My grandmother Dg. Klatskin tumor

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

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

8 (edited by xepalomero Fri, 07 May 2010 11:56:21)

Re: My grandmother Dg. Klatskin tumor

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... smile
She asked me (she always asks ME because I'm her "doctor" smile:) ( I'm a dentist smile ) 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).....

Re: My grandmother Dg. Klatskin tumor

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.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My grandmother Dg. Klatskin tumor

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

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

11 (edited by xepalomero Sun, 09 May 2010 02:34:54)

Re: My grandmother Dg. Klatskin tumor

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).

Re: My grandmother Dg. Klatskin tumor

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?

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My grandmother Dg. Klatskin tumor

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

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: My grandmother Dg. Klatskin tumor

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

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

15 (edited by xepalomero Thu, 13 May 2010 15:48:20)

Re: My grandmother Dg. Klatskin tumor

Dear Lainy,...thank you very much for replying! I live and work about 200 miles away from my parents / my grandmother. So my parents (as well as my aunt and oncle) are the the actual caregivers for my grandma, but I do try to help as much as I can. Because of my work it's impossible for me to stay with them during working week but since she was diagnosed I (and sometimes my wife) started spending weekends with them helping both my grandma and my parents to adjust to this new situation. I'm trying to get all the necessary information I think they may need, I'm buying dietary supplements for her, collecting info on possible treatment etc... I also contacted her gastroenterologist / oncologist on a daily basis to ask about her condition/diagnostic procedures/treatment/ when she was in the hospital. I'm so sorry I can't be there for her all the time, but I'm trying do all that I can to help her.
Now I think I'm just not dealing with this the best way I could.....
Can you imagine.. the Dr that was on call in the Emergency center just said to my parents they should give her some antipyretics to get the fever down , no antibiotics??? What are they doing? (ok perhaps because she's not feeling any pain / chills...)
I hope she'll be fine by tomorrow
Thank you for your help, it means very much to me

16 (edited by xepalomero Sun, 09 May 2010 03:07:54)

Re: My grandmother Dg. Klatskin tumor

I insisted that she gets some kind of antibiotic, so she did - and she started  taking it yesterday (until now she only took 2 pills - one has to be taken every 12 hours).  Yet, she doesn't seem to be getting much better, the temperature's still high.. But she's only having mild epigastric pain (no need for painkillers) and there are still no signs of that yellowish colour she had before. What frightens me the most is that this condition is getting her weaker and weaker and she refuses to eat...
My mom is still convinced that she only caught some cold the other day when she was at the hairdresser's... We decided to wait and see until tomorrow...we have to give the antibiotics some time to start working...

Re: My grandmother Dg. Klatskin tumor

You have to give the antibiotic a couple of days to work, as you know. These are tough infections. How about just some soup? Try giving her small amounts of food more often. Most everyone who gets these infections go in to the no eat mode. As I stated in the previous post (other page) our Nutrition posts may ahve some great information for you. Good luck.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My grandmother Dg. Klatskin tumor

Hi Xepalomero,

Thanks for the update on your grandmother and I hope the antibiotics do the job and that her temperature starts to drop soon. Lainy's suggestions of soup and eating small meals more often is a good one and this is something that my dad did. He also took the drink Ensure for a while when he needed to put on some weight and maybe that is something that you could use with your grandmother.

Best wishes,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: My grandmother Dg. Klatskin tumor

Thank you Gavin for replying,
you all have been such a great help to me during the past couple of days, I simply can't thank you enough. My grandma's already taking Abbott's Prosure drinks/meals and they seem to be doing the trick (she gained 2 pounds - hip hip hooray! smile ). I'll keep you updated,
God bless

20 (edited by DianneH Mon, 10 May 2010 07:38:39)

Re: My grandmother Dg. Klatskin tumor

Hi xepalomero,

I'm so glad that you found CCF. Everyone here and the information that is available will help you immensely.

Plastic stents can dislodge them selves due to general movement, bending, tumour growth etc. and usually are a temporary measure until surgery is decided on. However, once surgery has been ruled out, a more permanent metal stent can be inserted.

Metal stents are said to last 8-12 months (many last much, much longer), are much bigger in diameter and longer than plastic, and they are impenetrable. However, they can still block up due to tumour growth at the ends and build up of bile slug can also happen. Should it block up, generally another metal stent can be inserted inside the other one.

My 81yr. Dad was diagnose with CC at the end of January 2010, he has had two plastic stents put in since then, is not a candidate for surgery due to his age and other medical factors, and has had the metal stent put in 5 weeks ago. He just started anti-blood clotting shots Tinzaparin and will have his first round of chemo this week. In case you didn't know Cancer's have been know to cause blood clots, my Dad had a PE in August of last year, making it one of the first symptoms.

My Dad's appetite is not so great either, even the things he loved are a big turn off to him now... the liver is in distress and I think if the tumour responds to chemo or radiation their appetites will get better.

There are lots of ups and downs with this cancer, however CCF has made it all much more bearable.

All the best to you and you grandmother.

Re: My grandmother Dg. Klatskin tumor

Hi Xepalomero,

Glad to hear that your grandmother has put on 2 pounds and that the Prosure drinks/meals seem to be working for her. Here's hoping to see some more weight gain for your grandmother!

Best wishes,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: My grandmother Dg. Klatskin tumor

I hope your grandmother's health is continuing to improve, Xepalomero.  How are you today?

Julia

“When it is dark enough, you can see the stars." - Ralph Waldo Emerson

23 (edited by xepalomero Fri, 14 May 2010 12:41:45)

Re: My grandmother Dg. Klatskin tumor

Dear Julia, I'm fine, thank you very much for asking! My grandma's blood test results came yesterday and they're perfect! We really didn't expect her liver enzymes to come back to their normal level (nor did her gastroenterologist, at least he said so when she was leaving the hospital 4 weeks ago) and that's exactly what happened! So, before, her liver enzyme values ranged from,I'don't know, 500 to 700 and now they're back to 20-50 (within the normal limits), it's amazing! I didn't expect this to happen mainly because she has her stents (2) both placed into her right hepatic duct, so I tought since there's no bile flow from the left one...it had to accumulate in the liver, which would keep the enzymes permanently high, but...that's obviously not the case! Her bilirubin's back to 24, so I think she now has all the necessary prerequisites for the beginning of her chemotherapy! Well, at least I hope so! Her tamperature's back to normal too, so that's fine as well! Though, despite my wishes for her to start taking megestrol acetate for her loss of appetite/ weight loss, she's still not taking it (she... and my mom are convinced they should first check with my grandma's hospital oncologist whether she should be taking it or not, so I gave up insisting she should, hm....She'll have the appointment next week, so we'll see.

And, DianneH... thank you so very much for all the useful information on stents / blood clots, I really appreciate it. I do hope both you and your dad are doing well and I wish you both the very best of luck...

Re: My grandmother Dg. Klatskin tumor

I'm very pleased to hear of your grandmother's improvement!!  Good Luck with next week's appointment. big_smile

“When it is dark enough, you can see the stars." - Ralph Waldo Emerson

25 (edited by xepalomero Mon, 24 May 2010 12:08:11)

Re: My grandmother Dg. Klatskin tumor

I was on a complete emotional rollercoaster this week....Even if I forget all the stress at work I'm having, only because my (so much desired) summer holiday's speedily approaching (and my patients are dying to get all of their teeth fixed / their dentures/ bridges etc completed before that moment comes smile:) )...I can only say this week was pretty shocking for me...
The first shock was a positive one...it was on tuesday when my wife found out she was pregnant (for 6 weeks by now.... and after years of trying)...with our first child!!! smile And this new family-member-to-be would be my grandma's first grand-grandchild, can you imagine!? So, inevitably,I have another mission now: to help my grandma fight Klatskin Tm long enough to see this dream of ours come true!
So I took the second shock much harder....My mom had an appointment with my grandma's hospital gastroenterologist (the oncologist was, needless to say, unable to be present during the appointment due to her other (probably much more important !?) engagements) who checked her latest (very good) blood test results and was informed about my grandma's improvement during the last week, but told my mom that there's almost no use in any kind of therapy in my grandma's case, and offered her only a possibility of (palliative!!!) low dose 5-FU chemotherapy that has to be administred intravenously (the insurance here doesn't cover the costs of Xeloda pills that are equally effective, but when my mom said it's really no problem for us to give the extra sum of 600$ for the whole chemo cycle, he still refused to prescribe her with Xeloda saying that there's simply no use...., can you believe? I know I couldn't! We just can't have my 85 yo grandma drive 3 hours to the hospital and back on a daily basis for weeks ....it looks to me as if they really don't care at all what happens to her...and it's sad to say but---if she dies it's only one problem less for them(not to mention less insurance money)- they're thinking.. the old lady's 85 so, well, no wonder if someone this age dies, yes? I really wasn't looking at things this way... but now I'm quite sure this is the way the things go!
But they're wrong if they think we'll just leave the things as they are...I'm looking for an other oncologist who would check all of her tests (X-rays, CT and MR scans, blood tests) again and suggest an adequate treatment.
I mean, I'm aware of her age, but she looks and feels younger, her tumor's not even visible on ct scan,there are no mets...this is simply not the case that could be treated only with palliative chemo, we're not going to allow this to happen! ... That is, we'll see what the other oncologist will say...
Still, from tomorrow on she starts taking Megostat (megestrol acetate) and I'm confident it will help her with her appetite loss....perhaps even to gain some additional weight, we'll see...
I'll keep you updated