Topic: my father

Hello everyone, my name is Mao, and I am from China. I researched on the internet and found this wonderful website,  I am lucky that I can speak English, so I'd think I would join and post to introduce myself. My dad is 58, and he's really harding working, and I would do anything to take care my dad and let him enjoy life. 
We found a tumor in my dad's bile duct this January, and my dad had his surgery this Jan 30th, doctor removed his bile duct, gall bladder, and a small part of his liver; and connect the bile duct inside his liver to his duodenum(whipple?). Result showed that the tumor is malignant, but it's the only tumor, the margins and lymph knots and other organs are negative. After research, I believe my dad's illness is called perihilar cholangiocarcinoma.  My dad had fever (39.1C) 6 days after the surgery, and doctors were able to put it down by anti-biotics. Later my dad was fine and went home, and after 4 days he had high fever again. We ended up in hospital, and doctor thought it was due to a virus infection, so they used drugs to put it down again. Well, my dad's temperature has been fine for the past 5 days, and we went back home again. Is infection and high fever normal for people after whipple surgery? Will infections and high fever happen very often?
Also, doctor here suggest that it's up to us to do chemo or not, I researched online, and it showed that it's not proven that adjuvant chemo treatment will really help.
Please forgive my broken English, and I really appreciate if you could provide some suggestions. 
Thank you very much, and have a blessed day!
Mao

Re: my father

Welcome Mao,

Do not worry about your English, you do very well with that! Welcome to the site but sorry you had a reason to be here.

I am also so sorry to hear about your Dad but it sounds like they caught it at an early stage where it had not spread and were able to remove it.  That is an awesome thing.  I was also diagnosed with CC at around the same age as your dad and am a 3 year 3 month survivor of Extrahepatic Cholangiocarcinoma.  I had a whipple and did 6 months adjuvant chemotherapy (Gemzar).

Doing or not doing chemotherapy (especially adjuvant) is a very personal decision.  I was relatively young and overall very healthy and this chemo is easier to tolerate then many others (but still hard for sure) so I decided to do it.  No one can ever tell me it helped or did not help.  I also decided against radiation therapy because they could not prove to me that any benefits would outweigh the side effects.

Again, these choices are all so very personal and need to be made individually.  No one can tell you what to do here because there is so little research.

Your father is very lucky to have you by his side helping him gather information about this disease. 

I am sure others will come along and have more to say about infections and fevers.  I don't have any information about them since I have no personal experience with either.

I am wishing you and your father the best.

-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: my father

Dear Mao, you are a remarkable daughter and welcome to our wonderful family but sorry you had to find us. Yes, it sounds like Dad had a Whipple.
My husband had an aborted Whipple then the real thng 3 weeks later when he was 73. Clean margins and 5 different ONC/Doc said NO to chemo that it really would not help. Like Randi said though it is a very persional decision. The Whipple bought him 5 years. In just a short time, today, there are improvements with this surgery!
Yes, blood infections seem to go with this territory. Teddy had them like 2 X a year. Chills, fever over 101 and off to ER. They knew already to put him right on a Levaquin IV and it took about 3 days in the Hospital each time. The infections are just another road bump on the ride.
Your English sure does not look broken to me! Good job.
There really are no sage suggestions as everyone is different. Try to take each day at a time, be very strong as it will get you through this and visit us often. You are not alone, we are family.

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 father

Thank you very much Randi for the input and sharing your experience!! It's wonderful to get support from the other side of the planet!! Doctors here are too busy with so many patients, and they never talk to us longer than 5 minutes. I am thinking about taking my dad to the US for follow up treatment, if we decide to do adjuvant chemo. So far I have contacted MD Anderson, since it's sister hospital with the local hospital that my dad had surgery at. Are there any other hospitals that you would suggest?

Re: my father

Thank you Lainy for sharing your experience! I will pay attention to the infection, doctor here told me that have injection of Thymosin two times a week will help to improve my dad's immune system, I hope this will help.
I am learning to be strong and I am the only child, and I am also worried about my mom. She had lots of pressure since dad's diagnosis. I am praying for my parents every day. I am so glad to find our community, and I don't feel alone anymore.

6 (edited by PCL1029 Sat, 02 Mar 2013 11:12:50)

Re: my father

Hi,
Fever is not common after biliary surgery.Most likely the infection is related to the surgery. In general, it require at least 14 days of antibiotics treatment like ciprofloxacin  400mg twice daily or levofloxacin  500-750mg daily for 14 days to
eradicate the infections; If they put a stent or two in the bile duct to facilitate the bile flow, the infection may be more often. The rule of thumb is if your father has chill and the fever is >39 . Bring him to hospital right way so they can give him antibiotics or ask the doctor to prescribe levofoxacin 500mg daily ,number 14-21 tablets as standby for him to take at home when symptoms occur. In normal situation, the fever will go away in a couple days;keep your father hydrated is also important(6 glasess of 240ml liquid).
Adjuvant therapy ,as far as I am concern , I will do it with no reservation at this time. I do not know what kind of profession you are in, but you may have done research and know that Liver is the only organ that can regenerate itself; that means as few as one cancer cell left inside the biliary system, it will regenerate together with the healthy cells  in the liver of the  biliary tract ; therefore I believe no matter how well the surgery turn out, due to the fact that 50-75% of cholangiocarcinoma cases may recur  for the rest of our life time.( I am a patient of intrahepatic CCA) and adjuvant chemotherapy therefore is warrant to have it done.
Adjuvant may be one of the following.
1. Gemcitabine ,3weks on and one weeks off. (easy to tolerate)
2. Gemcitabine + oxaliplatin. (better tolerate than gemcitabine + cisplatin.)
3. Gemcitabine + cisplatin   ( widely used as a reference standard for CC)
4. 5FU infusional pump+ Leucovorin +oxaliplatin (good alternative to # 3)
5. and of course gemcitabine follow by chemoradiation with capecitabine.

For systemic chemotherapy for  treatment of advance cholangiocarcinoma
below is the link.

http://www.cholangiocarcinoma.org/punbb … 198#p57198

By the way, may I ask where you get your treatment,in the capital of local hospital;Can you give us any names of the hospitals and doctors that help treating your father . We are an international community and some one in China,like you, may want to know that information too to help their parents or relatives. As you know liver disease is much higher than in China than in the States. your info. will help others in China as well.

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: my father

Hi Mao,

Welcome to this site, but I am very sorry you had to find us. I think your English is great!! I'm sorry I cannot provide you with any information about fevers and infections. I just wanted to welcome you and hope that your Dad continues to improve.

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: my father

Hi Mao,

Welcome to the site. Sorry that you had to find us here and I'm sorry to hear what your dad is going through right now. But I am glad that you have joined us as you have come to the right place, and I know that you will get so much support and help from everyone.

And please, your English is very good indeed so you have no need to apologise for it! I am Scottish and your English is better than mine is!!

You are doing everything possible that you can for your dad right now and I know how much that will mean to him. Like Lainy and Percy have said, unfortunately infections are all too common with this cancer so that is something to keep a look out for.

As to other hospitals in the USA, here is a list that may be of use to you -

http://www.cholangiocarcinoma.org/major … enters.htm

And there is a list of doctors and treatment centres here on the site that treated the members here or their loved ones -

http://www.cholangiocarcinoma.org/punbb … hp?id=3126

And the hospitals board can be found here

http://www.cholangiocarcinoma.org/punbb … .php?id=42

I hope some of these will be of use to you. Please keep coming back here and feel free to ask any questions you have and we'll do what we can to help. I was my dads carer during his fight with CC and like you I too am an only child. But you are not alone anymore, we are here for you. We know what you are going through right now and we care. Stay strong.

My best wishes to you and your dad,

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 father

Thank you very much, PCL1029, Pam and Gavin, for the kind welcome and valuable information!! I don't feel alone anymore, and I know that I am in a community with kind and caring people!!
My father was treated at Tianjin Tumor Hospital, and his doctors are Li Qiang, Zhang Ti and Dr. Cui(I don't know his name).
Here is more information regarding my father. About 9 months ago, last May, doctor found my father had gall stones; since my father didn't feel anything bad, we didn't do any surgery to remove the gall bladder. Doctor didn't find any suspected tumor then, maybe because he only did ultrasonic. My dad kept losing weight, and he lost about 10kg last year. This January, I asked my father to do a ultrasonic again, he kept telling me he's fine, but I finally persuaded him to go to the doctors. Then doctor suggest that we do a CT on the bile duct area; and doctor found a tumor in the area where the bile duct comes out of liver and connection the gall bladder(perihilar?). Since this was a hospital treating gall stones, so we showed his imaging to the doctors at Tianjin Tumor Hospital. Dr. Li Qiang(his current doc) told us that this is bile duct cancer and he need to have surgery immediately. Then my dad had his surgery on Jan 30th. The testing result of the tumor said that the tumor is mid-poor differentiated adenocarcinoma(and it has grow out of serous membrane), the tumor is localized without invading to lymph knots or nearly organ(liver negative), and margins are negative. My father's tumor markers both before and after the sugary are all negative though, doctor told me that some tumor doesn't light up the markers. Any suggestions on this??

Re: my father

Dear friends, also what's the best time for adjuvant chemo therapy, my dad had his surgery on Jan 30th. It's been almost a month, but I think he still need another month to recover, so that he can travel to the US.
thank you...mao

11 (edited by PCL1029 Sun, 03 Mar 2013 10:15:17)

Re: my father

Hi,
On the contrary , I will get a second opinion in China, like the best tumor hospital in Beijing ( I do not know the name), for oncology and interventional radiology consult first before coming to America.
The reason is simple, every year in the most prestige oncologist convention here in Chicago,the ASCO convention, there were a lot Of Chinese md attending and bring home what they learned.
Since most likely, the oncologist in China will start the same protocol they have learned in the States here in Chicago, I do not think the chemotherapy regimen is that much of a difference when it begins.
However ,I will bring my dad here if the 1st line chemotherapy like GEM/CIS or GEMOX do not work after the first CT scan when  he has the chemotherapy treatment. In that way you will get more specific info and expertise to treat your father.
As a general rule of thumb, if the surgery went well, patient can start their adjuvant chemo six to eight week after surgery if they have no other medical problem prior to the surgery.
So you still  have time to search for the best hospital in Beijing for 2nd opinion.
Mostly likely the best hospital are the one that are  affiliate with well known university.
One final note, do not go to the hospital that use Chinese herbal medicine as their main treatment objective. Go to the one that practice western style medicine.But it does not mean you cannot give 八珍湯 or 十全大補湯 those kind of Chinese herbal soup to your father during this no treatment period to boost his energy level to fight the side effects of the chemotherapy. Ask you mom or you to increase his protein intake by drinking soy milk豆湬 or cooking 豆腐 ,fish, walnut , chicken without the fat and skin ,Ensure, Boost are among other protein sources. He can  boost his immune system by taking  Oncozac , the only yunzhii extract researched in Hong Kong Chinese university  that has USP approval for it purity in the States.
After all of that, then prepare to choose which hospital for the next journey if USA is your main wish to come to. MD Anderson is famous in chemotherapy but make sure this is your father'Wish since side effect will decrease the quality of life a lot .he will know after chemotherapy treatment in your hometown or Beijing. if you want to go to HongKong for consult, e mail me at that time and I will help you found the best there.
Can you tell me what are the tumor markers and their  lab value before and after result.
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: my father

Mao,

I began my chemo about 8 weeks after my surgery.  My doctor said that is the longest he would wait to begin adjuvant chemo.

-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: my father

Mao,
Your fathers story sounds similar to mine in terms of the type and location of the tumor as well as the surgical procedure. It was recommended that I have adjuvant treatment which included 5fu and radiation because they were unable to get clear margins. For me, I wanted whatever they felt would increase my odds regardless of the treatment side effects. It obviously is a very personal decision. Because the additional treatment improved my faith and hope of a good outcome, I found the treatment itself to be not a problem. Did the adjuvant treatment prove to be effective? One can only speculate but I have no regrets - I believe I made the right decision and I'm sure you will too. May God bless you and give you wisdom and peace concerning your fathers treatment options.

bob

Re: my father

Hi PCL1029,Thank you for your suggestion and recommendation!! It's really helpful, I am going to see another doctor in Tianjin for 2nd opinion tomorrow. I am booking an appointment for another doctor in Beijing, I will find out the best for my dad this month. Here are the results for my dad's blood test of tumor markers:
3 days before surgery:
Ferr               175.9
CA242           11.72
CA19-9          16.15
CEA               1.99
AFP               1.94
23 days after surgery:
Ferr               730.5(doctor here told me that ferr being high is normal for people had liver related surgery)
CA242            6.03
CA19-9          18.43
CEA               1.75
AFP                0.856
Thank you very much! And have a blessed day
Mao

Re: my father

Thank you Randi and Bob for sharing your experience! I don't feel alone anymore, and I feel like I am a big loving family. I cannot say enough to thank you all.
Have a blessed day!
Mao