Topic: Hi everyone

My name is Hugh, im really happy to see there is such group here which really helps and can see some positive things other than those Ive been searching..

My wife Joe age 43 diagnosis CC on the 25th April 2013, due to stomach pain (for almost a month) and on that day her face and eyes turns yellow so we rush her to hospital and the out come for sure everyone here should knows...

lucky thing is she did surgery on 10th May, which took out half of her liver, bile duct and some lymph nodes around that area...   result seems to been pretty fine and she came out of hospital in 5 days after the surgery..

now she still resting at home, her body weight seems to go up and down after her surgery.. the day arrived home at 102lbs.. then up to 112lbs in 10 days... but for the last 5 days she drops back to 104lbs... I know she need to keep her weight up for the next battle.. but somehow she didn't keep up and the Dr said that's normal after surgery...

she did a Pet scan 2 days ago.. it also seems pretty good that no other place got infected other than those place which did surgery got some kind of signal and that the Dr. already told me it will happen be4 the scan

My question is there are 2 ways of adjuvant treatment from 2 different Dr. I consult. which one should I choose...

1. GP which is Gemcitabine and Cisplatin for 3 weeks treatment total of 6 treatments (which is totally free through government hospital)

2. IMRT with Xeloda for 5 days a week total of 5 weeks treatment and then if possible 3 more 3weeks treatment of Xeloda and Oxaliplatin for preventive.
this sounds more aggressive and for sure this I have to pay massive amount which is not cover by government nor insurance.

Re: Hi everyone

Dear Hugh,

Welcome to this site, but sorry you had a reason to join it.  I am sorry to her about Joe's diagnosis and all that she has been through.  I am a 3 1/2 year survivor of extrahepatic CC (no lymph node involvement).  I had Whipple surgery (with clean margins)  and adjuvant chemo of Gemzar 1x week/3weeks on, one week off. 

My situation appears to be different from yours in that your wife's CC sounds like it was inside of her liver and I am not sure of the status of the margins or lymph nodes. 

It is really hard when you get two differing opinions.  Have the doctors explained the  reasoning behind their recommendations?

choosing adjuvant therapy is a very personal decision and one of the ones that people on this site struggle with often.  One course of treatment for one person does not usually translate to another because the presentation of this disease and it's progression vary quite a bit from person to person.

My recommendation would be to talk to the doctors more and find out why each recommends what they did and why they think the other recommendation should not be done.  Perhaps that will give you more insight.

Keep us updated.

Take care and my best wishes to your wife,
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Hi everyone

Dear Hugh, welcome to our exceptional family but sorry you had to find us. On the other hand Congratulations to Joe on a successful surgery. I echo what Randi said and would also suggest a 3rd opinion which may help you decide. We have had members even go for 4th opinions until they feel secure with their option. I also have one more suggestion about Joe's weight. Instead of regular meals have her 'graze' all day long. Easier to digest  when eating smaller amounts. Best of luck to you both and please keep us advised on how things are going.

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: Hi everyone

Thanks Randi and Lainy,

the 1st opinion is from HK government hospital. due to the lack of statistics information that prove other medicine will work on CC, they will only provide this GP treatment to those who want to try using it as adjuvant.

the 2nd opinion is from private Dr. who think we should be more aggressive, which should try IMRT to those lymph nodes around the liver area, the Dr. thinks that's the most likely place those cells still hiding.. then Xeloda should be a much better Chemo with lower side effects...

Dr said if the GP can give u 10-30% chance to clear the cancer cells, the aggressive treatment can give u up to 50-60% chance. but the price will be around 40K USD.

Ill be seeing another Dr. tomorrow to get 3rd opinion, lets see what will he say, and Ill keep you guys update.

Thanks

Re: Hi everyone

Excellent Hugh, looking forward to what you find out. By the way, we really learn patience as these CC surgeries usually have a longer recuperation period than your average run of the day surgeries. Joe's body will let her know when she needs to rest and unless you see a change in her eating habits, that too will get better.

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.

6 (edited by PCL1029 Wed, 12 Jun 2013 19:35:19)

Re: Hi everyone

Hi, Hugh,
I met Dr. Thomas Yau, the chief medical oncologist from Queen Mary Hospital which is affiliated with the University of Hong Kong at the 2013 ASCO convention at Chicago on June 3rd.  He was at the ASCO to present a poster title: A Multi-center Phase II Study of Sorafenib,Capecitabine and Oxaliplatin(SECOX) in Patient with Hepatpcellular Carcinoma.

He told me Queen Mary Hospital is the best hospital in Hong Kong( Public hospital) in treating and researching on  Liver cancer  and cholangiocarcinoma. The Liver specialist is  Dr.Ronnie Poon. So, if you have never been checked out by them, please do make a 2nd opinion  consult with him and Dr. Poon.

Of course, if money is no object, you will go to the hospital that all those rich man and woman go on the HongKong Island side.

Both chemotherapy regimen are fine. But the chance of recurrence are very high (50-75%) no matter which one you will choose( the difference may be in a few  months rather than in years in my opinion); if she is a  chronic hepatitis B  carrier, the recurrence  rate will be higher . so be prepare and keep up with the knowledge that may be useful in the future.

As always, I am not a doctor but just a patient of this disease and can be wrong on my assessment .
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Hi everyone

Hi Hugh,

Welcome to the site. Sorry that you had to find us all here and I'm sorry to hear about Joe. But glad that you've joined in with us here as you're in the best place for support and help, of which you will get a load of from everyone here. That's great that Joe was able to have surgery as so many people are not able to do so after diagnosis, and I am very happy to hear that it went so well. I do hope that her recovery continues to go as smoothly as it has done so far.

Glad to hear as well that you have sought 2 opinions already re chemo and are looking to get a third as well. The more information you have the better and please let us know what the 3rd onc suggests. I have no personal experiences with chemo as my dad never had it but you will find a wealth of experiences re chemo here on the site.

Please keep coming back here and let us know how everything goes, and if we can help in any way then we will. We are all here for you.

My best wishes to you and Joe,

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: Hi everyone

Hi, Hugh,
Did you talk to Dr. Thomas Yau  or you have more questions to ask here for me.? I am originally from HK.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Hi everyone

Thanks everyone for the warm welcome... i'm back with my 3rd opinion..

This Dr. seems kind of soft and not really aggressive.. he just prefer to use Gemcitabine and oxaliplatin for Chemo.. then after 10-15min talks about it and I finally raise up about RT then he start saying its better with RT only if u can effort.... he even said Gemcitabine and Cisplatin is good option other than the side effect is a bid more than Gemcitabine and oxaliplatin...

so we decided to use the 2nd opinion... IMRT with Xeloda.... although nobody can tell is that the best idea.. but what we felt is we rather try the aggressive way instead of just seat and wait.

Thanks PCL1029: yes Queen Mary is the best Government Hospital in HK and that's where I got my 1st opinion. but the problem is they also didn't got enough statistics information that prove other medicine/treatment will work on CC, so they cannot give anything other than Gemcitabine and Cisplatin, that's why the professor kind of suggested us to go get 2nd opinion from private (she said im not saying the Gemcitabine and Cisplatin are useless or outdated, but there might be something better or newer out there). some other cancer like bowel cancer, Breast Cancer they will let u choose either pay on your own to buy better medicine/treatment or free for the standard.

Re: Hi everyone

o Hi PCL1029: so u also from HK!!! nice meeting u!! well u know we cannot choose Dr. at Government Hospital.. isn't it???

11 (edited by PCL1029 Sat, 15 Jun 2013 12:36:01)

Re: Hi everyone

Hi,
Well, as you know, it won't hurt to ask  or give him a call indicating that someone recommend him to you for a second opinion from the States at the recent ASCO meeting at Chicago, I gave my business card to him and I told him I am volunteer for The Cholangiocarcinoma Foundation as a moderator. I even asked him in Hongkong whether such Internet disease  discussion board about liver cancer exist. He told me no.  If he says yes, then you get his attention, if not ,then just do what you have desided. One more connection won't hurt even if he says no. (I resided in the States for > 40years, but I think connection is the key to everything in doing business in Hongkong ,Am I still right ?)
The reason is I want to start one of such web site like this discussion forum to provide my experiences and help to people like you in Hongkong, Taiwan and Singapore who wants to know the most uptodate medical information about liver and bile duct cancer who otherwise do not know English. I tried the one web site for mainland  China, but they screened my message and delete my entry; may be because I use the term " patient Advocate" or " God bless" in Chinese and they do not know what that actually mean.
BTW , you did not mention the stage of your wife' tumor and where is it?  Inside or outside the liver;  The location counts a lot to determine what is the treatment approach. And what is the name of the oncologist that provide you the IMRT+Xeloda? Did you ask her in her guest that how much longer, timewise that your wife will have as compare to just having GEM/CIS OR GEM/OX even though the answers are without actual meaning in terms of the actual outcome for your wife.what I mean is progression free survival time(PFS)
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Hi everyone

well the worst part about HK government hospital Dr. is everything they need to go by the book and policy, they wont tell u more than what they can do there.. so they will kind of give u hint about there "might be" something better out there... that's means they think out there might be better if u can effort, or they will say there are no different compare to private. then u know u don't need to waste your time and money.( that's what a relative whos a Dr. works at Government Hospital said)

well yes its really tough to start a forum like this in China. but other than China I think should be easy for u to do so.  Hong Kong, Taiwan and Singapore should be good to start with. people from these country should be able to speak or read simply English.

About my wife's tumor, after the resection the report like this:

Moderately differentiated adenocarcinoma of common bile duct, with maximal tumor dimension 25mm
Gallbladder with features of chronic cholecystitis
upper end of common bile duct involved by tumor
tumor invading the periductal soft tissue and liver parenchyma
5 out of 7 hilar lymph nodes with metastases
lymphovascular permeation identified
clear resection margins
pT2N1 stage

Re: Hi everyone

about those Dr. that involved im not sure should I put their full name up here.. but Ill just leave their last name here...

Dr Chow is the oncologist that suggest the IMRT+Xeloda , she was saying if GEM/CIS can lower the recurrence chance by 10-30%, then IMRT+Xeloda should be around 40-60%.

I understand those numbers is kind of BS, but at least we don't need to be regret if its recurrence when we did try our best.

also why we chose Dr Chow is becoz she refer by the Dr. we really trust, a private Dr. in HK that don't have the $ in her eyes!!! she treat her patient as a friend, she did this HUGE surgery to my wife and my wife can leave hospital in 5days!!! she so amazing!!! Dr. B Chik!!!

Re: Hi everyone

Hi your wife looks like has a stage IIb extra hepatic  CCA;so the PFS is relatively good and I do agree that IBRT and Xeloda is a good choice. If I can in the future,I will use Chinese for the Chinese discussion forum. Happy Father's Day .
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Hi everyone

Hi Hugh,

You wrote:

My question is there are 2 ways of adjuvant treatment from 2 different Dr. I consult. which one should I choose...

1. GP which is Gemcitabine and Cisplatin for 3 weeks treatment total of 6 treatments (which is totally free through government hospital)

2. IMRT with Xeloda for 5 days a week total of 5 weeks treatment and then if possible 3 more 3weeks treatment of Xeloda and Oxaliplatin for preventive.
this sounds more aggressive and for sure this I have to pay massive amount which is not cover by government nor insurance.

You can lower your out-of-pocket cost by doing IMRT with 5FU, followed by Gemcitabine and Cisplatin. This adjuvant treatment plan is common in North America. My wife had this treatment after her surgery.

I'm not aware of any data to say that IMRT+Xeloda is more effective than IMRT+5FU, or that Xeloda/Oxaliplatin is more effective than Gemcitabine/Cisplatin.

Note that 5FU and Xeloda are similar drugs. Xeloda is a pro-drug of 5FU. It converts to 5FU in the liver. 5FU is older than Xeloda, so it costs less. Xeloda is more convenient for the patient because it's a pill that you can take at home. 5FU is done through IV.

You further wrote:

Dr Chow is the oncologist that suggest the IMRT+Xeloda , she was saying if GEM/CIS can lower the recurrence chance by 10-30%, then IMRT+Xeloda should be around 40-60%.

I understand those numbers is kind of BS

I agree with your assessment. I think she pulled those numbers out of thin air to sell you on her treatment plan. I doubt she can produce any solid evidence to validate her claim. By solid evidence I mean published, peer-reviewed medical studies.

That said, I think she is right to recommend a more aggressive treatment that combines radiation and chemo. 5 positive nodes put your wife at a high risk of recurrence.

Re: Hi everyone

PCL1029: so u can read and write Chinese?? try this http://www.discuss.com.hk/forumdisplay.php?fid=855

eli: thanks for your advise.. I asked Dr. Chow and the Government Dr.the same question (do RT private and Chemo at government), but they both rejected and said who will be responsible if anything happen...