Dear Lainy,

so true! Thank you for your kind words!

my best wishes,

SP

Dear all,
so many things happened during my long absence from this message board. We've had many bad moments, but also some happy ones. Our lives are changed forever.
My grandmother lost the battle with her illness in December 2011, after 2 long years of struggling, at the age of 86.
She never received any kind of ethiological therapy for her illness (surgery /chemo) so she was basically on palliative care from day one after her dg  (she was given not more than 3-6 months to live back in 2010). However, she proved them all wrong!
She lived to see the birth of both of her grand granddaughters in January 2011;
she kept her mobility during almost the whole duration of her illness;
according to her wish, she received palliative care at her home, in her bed and she passed away quietly in her sleep.
May God bless her soul and may she forever rest in peace.

I wish all of you the best of luck: don't ever give up hope!

SP

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

4

(6 replies, posted in General Discussion)

Cholecystectomy combined with hepatectomy is a very complex surgical procedure and it's really great to hear that it went so well for your dad! Look after him well and keep us updated with all the good news in the future!
I wish you and your dad the best of luck...

It's always great to hear some good news! Good luck to you and your mom!

Raye, we already did, thanks for suggesting it smile !

7

(22 replies, posted in General Discussion)

Gerry,

I wish you the very best of luck with your surgery (well, now, since it was today...I hope it went well) and, what's more important, a very speedy recovery. We'll keep our fingers crossed for you...

Well, well well, the second Croatian to join this community in such a short period of time! Indeed, welcome! I joined only a few weeks ago myself (also struggling with my english, but considering the fact that these disscussion boards really do help a lot (and espacially this one if you're dealing with CC)... it's worth struggling)... I'm really sorry to hear about your mother's diagnosis but I (like most probably the rest of us do) feel and think that you're doing all the right things. And, I think that you should keep in mind that, giving all the scientific data available (on PubMed for instance) among all the causes for the bile duct stricture (of "Klatskin" type) , about 15 % are benign...And, if there's no cancer on her ct scan after a whole year, and if the biopsy doesn't reveal anything...you should consider asking for another opinion, don't you think? However, many other, not so benign conditions can cause bile duct obstructions, so anything is possible, it's hard to say. If your mom wasn't diagnosed in one of Zagreb's major hospitals (Rebro / Dubrava/ Sestre Milosrdnice) you may consider taking her there for check up / second opinion perhaps...
I was thinking of doing the same in my grandma's case (She was diagnosed in Rijeka)...still haven't done it....for the time being....
It's kind of strange not to be able to write to you in croatian, but I think it may be rude toward the others on CCF forum who wouldn't understand us...but if you need any kind of information you might feel I would be able to provide you with,  please feel free to contact me via e-mail (na hrvatskom).
Keep us updated..
I wish you and your mother the best of luck

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...

Yep, you really showed them who's the boss smile  Good for you...
Have a nice time in Greece, enjoy the sun...

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

12

(19 replies, posted in Nutrition)

Me and my wife are under a great influence of The Zone diet philosophy, introduced (I think in the late 80s) by the american biochemist - Dr. Barry Sears. It advocates, among other things, consuming calories from carbs, proteins and fat in a balanced ratio and it stresses the importance of Omega 3 intake on a daily basis. My grandma who was recently diagnosed with Klatskin type CC would off course not be able to follow the strict rules of this diet (which would include 5 regular meals during a day) but I feel (and there is some evidence) that insisting that her meals contain enough carbs (preferably from fruit and vegetables, no rafined sugars, no artificial sweeteners ( perhaps Agave syrup, fructose or Stevia instead)), enough proteins (if not red meat / chicken then fresh fish, or at least enough proteins from dairy products or in form of powders) and enough good fat (ok, perhaps not too much but based on olive oil, purified fish oil and almonds) can only do her good, don't you think?
We are giving my grandmother two little cups of NONI tahitian juice (alleged immunity booster) per day, Aloe Vera extract - also in form of a juice, Purified Fish oil (to increase her Omega 3 (EPA) intake). She's eating vegetables (broccoli, spinach, carrot), steam-cooked fish, some meat. We've also started giving her Abbott's Prosure supplement meals for cancer patients.
We've been able to get her some organic food (like vegetables and fish) but here in our country it's still hard to find organic dairy products - and she loves them! -so we'll try to get it from abroad, if possible). I'm also planning to get her ImmunoAHCC supplement before she starts her chemotherapy. I also think that vitamines B6 and D3 should do her some good. Still don't know anything about IP-6....

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...

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

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).

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).....

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

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!