Topic: MY DADDIE :( == hilar cholangiocarinoma

My senses are mixed with reality and dreaming-- feel like in a coma- after my dads is diagnosed of this cancer, in another term "intrahepatic bile duct cancer" just last week thursday of (04/19)---> I recall the Dr. waiting for me to translate to my dad since my father barely speak english at all. I was shaking heavily, nervous and afraid and translating to my dad had never been so hard, holding my tears and hiding the fact he only have 6 more months if the resection are not possible and even if they can get the tumor out it is only 10% of success rate. I"m still in a dream right now and search here for some comfort, some knowledge and understanding of how to go from here, I hope to get some good advice and guidance about my dads road from here, what is the best Dr and hospital and treatment for him? The Dr said that he will be transferred down to spectrum where there is only one dr in the area that can help my dad with this cancer (resect the tumor) and only with 10% success rate and if the Dr accept this challenge since the tumor is intrahepatic so it will be too deep into the liver. I read somewhere that mayoclinic and karmanos cancer center in detroit, MI are two great hospital specialist in this bile duct cancer. I'm looking for some guidance/alternatives if the Dr. at spectrum refuse to dissect the tumor out, what should I do??? I'm scare to think of that and since his tumor is not metasis, is that good enough for the resect to take place?? n is it true only 6 months? and if the surgery is possible and after that, how long in average how long does he have to be with us family stilll.. please give me some guidance and comfort, i'm going crazy and can't focus to study, finals are coming up and my rotation is starting soon.

Re: MY DADDIE :( == hilar cholangiocarinoma

huong-my, welcome to our remarkable family, so sorry you have to be here. I know that when you are first given CC as a DX it is like getting hit in the stomach with a baseball bat! But, I promise you that when a game plan is put into play the fright turns to fight! I can only imagine how hard it was to tell your dad. We DO NOT listen to time frames as we were not born with expiration dates on our feet! We have had members given shorter time frames and they are still with us, some after 10 years. Everybody is so different with this strange CC. I have never heard of  Karmanos cancer center Personally I would never go to a Hospital where there is only 1 CC ONC. That means they do not see many CC patients. Mayo Clinic treats a lot of CC patients and there are other Hospitals who treat a lot but are further away. John Hopkins, Sloan Kettering and NY Presbyterian. Usually a tumor that has not Met beyond is resectable depending where it sits on the liver. First I would collect copies of all his LABS and tests and pick another Hospital or 2 and FAX everything to another Hospital. I know it all seems overwhelming right now but others will come along here with more suggestions and this is a great place to start. Wishing you the best and watch for more help coming soon.

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.

3 (edited by PCL1029 Mon, 22 Apr 2013 16:04:33)

Re: MY DADDIE :( == hilar cholangiocarinoma

Hi,
May I ask what state you are living in now so I can lend you a hand in recommending a hospital for you.
Even if the doctor from spectrum  will operate on your father,it does not mean your dad getting the best treatment. The liver surgery of cholangiocarcinoma (CCA) required liver specialist to perform the operation . Mayo clinic Dr. Gores and his peers, New york Columbus/Pres. hospital Dr. Keto and his associates;Sloan-Kettering in New York, Dr.Brems at Sherman Hospital in Elgin/Chicago and Washington University in St. Louise and UCSF or USC in California are the choices on the west coast.
Surgery,radiation and oncology are the three arms of a triangle that you have to seek help for each specialty before the best decision can be made.
I am a patient and not a doctor,but i can tell you I am still alive after liver resection for almost 48 months now and I am doing well. So here is my suggestion:
1. Calm down first and knowing that it is not the end;every patient is different in response to treatment and the prediction of "how long a patient can live" are not apply to everyone and I am one of the example of that false statement.
2. Choose one of the above hospital and call or email them to start the process the sooner the better;tell the people who answer your call that you want a 2nd opinion on surgery of the liver and need to see a liver specialist or surgeon to check out whether surgery is still an option for your dad., a 2nd opinion on radiation treatment  if surgery is not possible and finally a 2nd opinion on medical oncology to start chemotherapy or clinical trial(in that order if you can) .
Other people will come soon to give you emotional support and comfort you better than I could.
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 DADDIE :( == hilar cholangiocarinoma

Dear Percy, that other people just showed up to help and that is why we LOVE you! Thank you so much.

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 DADDIE :( == hilar cholangiocarinoma

Hi, PCL and everyone that reply, thanks so much for yours response, I live in Grand rapids, Michigan. My dad has an appointment with Dr. Chung at Spectrum Downtown this coming wednesday for the discussion and review of his labs/DX. Should I wait to see how he is and what he have to say about my dad condition before deciding to transfer my dad somewhere else.. Yes, I'm suspecting also b/c Dr. Chung is the only dr in the area that are able to do this surgery-- I am scare and worried b/c I do want to fasten the process before his condition become mestasisize

Re: MY DADDIE :( == hilar cholangiocarinoma

huong-my....I agree with Lainy and Percy.  Don't allow defeat to take over.   Although physicians try to "guestimate" no one has an expiration date stamped on his/her feet.  Searching out an opinion from a physician "very" familiar with this disease is a must. 
Please know that medical records have to be released to the patient. Therefore request everything and anything pertaining to your Dad's diagnoses from the hospital and the physicians involved.  (This includes doctor's notes.) 
You then would want to find out about insurance coverage for second opinions.  The odds are that the expert is outside the insurance plan list of doctors. 
Some physicians have been mentioned already; hopefully others will come along and share with you the names of their doctors also.
Take a breath and catch your bearings - much more information has to be obtained.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: MY DADDIE :( == hilar cholangiocarinoma

Huong- my:    I have Intrahepatic cholangiocarcenoma with resection Feb 19th at Cleveland Clinic.  Took complete right lobe(60%) and gallbladder.  Surgery was successful but did have some vascular invasion.   My surgeon was Dr. Aucejo and my wife and I loved him.  Treated me as a person not just a patient. I live in Syracuse,NY and working with local Onc.  CT scan every 3 months and then every 4 months. 

Good advice above.  Prayers go out to you and your dad!!

Re: MY DADDIE :( == hilar cholangiocarinoma

huong-my, my humble opinion is that I would keep the appointment for Wednesday which would give you the time to gather the info needed to start sending out your info to others for opinions. And yes I would also see what Chung says on Wed.  Again lots of experience is the key here. Be strong, lots of love and care here and you are not alone!

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 DADDIE :( == hilar cholangiocarinoma

Huong-my,

I would like to welcome you to this site and tell you that I am very sorry about your dad. Have you looked into University of Michigan Hospital? We live in Ohio and travel to U of M for my daughter Lauren's care. They have an excellent cancer center and Lauren has a wonderful oncologist, Mark Zalupski. She also has a brilliant liver surgeon who does many resections and liver transplants named Christopher Sonnenday. She has had the first of a two part liver resection on March 26th after being on chemo for 17 months. She will be having the second part in May. She was always considered unresectable until recently. We could not be happier with the great care she receives from these two doctors. I hope you find a facility where your dad feels comfortable and he gets excellent care.

-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 DADDIE :( == hilar cholangiocarinoma

Hi, Huong-my,
Please  keep the  appointment with Dr. Chung at Spectrum Downtown this coming wednesday for the discussion and review of his labs/DX. In the meantime, prepare and gather all the CT scan computer disc,radiology and lab reports and start contact the hospital of your choice. You can wait after the Wednesday appointment to do so.
For Wed, appointment; ask the surgeon
1. what other alternative treatment if he says no for surgery(ie: radiation treatment like SBRT  and the local oncologist he will recommended)? and why your dad cannot have surgery? is the tumor locate in a difficult area(ie: near major blood vessel) so surgery is not possible? How big (ie: 2cmx3cm)is the tumor and where is located?
2. What stage of cancer your dad is in right now? I,II,II or IV.
3. ask him where he will recommend you for a 2n opinion?
4. If your dad can have surgery, ask him  how many cases of liver surgery he has performed last year or so(ie: 8 cases last year_) and ask him to explain what he will do during surgery?(ie: take out the left lobe );the recovery time after surgery(ie; how long needed to stay in hospital).
5. If your dad can have surgery;then tell him/her(the doctor) you will think about the surgery and will call him back.(after you get the second opinion from other hospital).
6. Keep in touch and tell us on this message board what the doctor say afer the Wednesday appointment.

In the mean time try to look up the info on this board the stages of the intrahepatic CCA; and  choose one of the patient  on this message board who had intrahepatic CCA like your father and learn about their experience so you can prepare what to expect.
Finally, knowledge is power and the more you learn about this disease ,the   better understanding you will have to help your father. and this web site is one of the place to look for up to date information for this disease.
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.

11 (edited by PCL1029 Mon, 22 Apr 2013 21:47:20)

Re: MY DADDIE :( == hilar cholangiocarinoma

Hi, Lainy,

Thanks for your compliment, but you know without you on this board,there will be no poet to calm our emotion;there will be no companionship among caregivers and patients alike; and there will be no "steroid driven" funny stories to be told. Youare one of a kind that this board cannot afford to be
without.
I just do what I can for the very few of people who seek specific info. But the majority people need you and other members to provide the emotional support that a man like me most of the time cannot understand or provide.
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 DADDIE :( == hilar cholangiocarinoma

Percy, you are the best. And thanks. I don't want to brag but we do have the most phenominal Family. You made me feel so good as sometimes I feel so inadequate since medically I only know what we went through and I know we did it with laughter. What I have learned is, I had some good teachers here. OMGosh speaking of steroids ,these 2 new ones are killin me, Humira, Ucera. Man, to pay 1,000 a month to feel sick and loose hair, I could hire a sadistic fool to beat me up almost for free! Tell your wife I just love her husband, so to speak!

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 DADDIE :( == hilar cholangiocarinoma

Huong-my,
Sorry that you had to find us. I am glad Pamela chimed in. I was going to send you her way so you could hear her daughters story.
My story in a few sentences is: I, too, thought this was a death sentence. I was healthy and 47 when diagnosed February-march of 2011 (tests and scans, etc took 2 months). I immediately sought another opinion at Sloan Kettering, which is about 3 hours away. I am not operable either, but in 24 months, have been in the hospital less than 1 month total. I am otherwise still healthy, and no longer consider this to be a death sentence. I consider it more of a life sentence because I know how precious each day is and most people don't get this chance.
After 2 years with Sloan Kettering, I recently changed to Fox Chase and have entered a clinical trial that seems very hopeful.
I know it's a lot to handle, but stay positive and find the best doctor for your father. One he trusts is very important.
Prayers go out to you and your dad.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: MY DADDIE :( == hilar cholangiocarinoma

I live in Grand Rapids and just had half of my liver removed by dr. Chung. I found him to be a fantastic surgeon who took the time to explain as well as listen to my questions. I recovered very nicely from the surgery and am currently doing chemo.  My wife is a doctor, not a surgeon, and tells me we are fortunate to have dr Chung in Grand Rapids.  I would use him again in a heartbeat.

Re: MY DADDIE :( == hilar cholangiocarinoma

Percy and Lainy I love you both so much. Just wanted you to know! You brighten my day every time I come here. So do so many of the rest of you - Marion and Randi and Lisa and ....   we are all so blessed with this family!

Re: MY DADDIE :( == hilar cholangiocarinoma

Aw, Holly, you are too kind. Honestly I just get so much more than I am giving as I am totally addicted to this Family. Think about it, no one argues, no one goes in to a jealous rage, everyone is kind and only uses the nicest of words. I often say if the World took an example from this Board what a great and kind World this would be.
And, oh yes, no one takes my clothes!

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 DADDIE :( == hilar cholangiocarinoma

Stan- and everyone that reply :: thanks so much for everyones comment and suggestion.... Here is my update...

=== My dad seem to be resectable, the nurse call to let me know to call dad's primary doctor for a "pre-operative" clearance and it will be this coming tuesday. She also said to wait for a phone call - the dr will placed a tube from outside into his liver to drain the bile and said that this will direct him for surgery. The set date is 05/14... Dr. Chung-- seem to be very knowledgable, and after reading Stan's comment, I thank you for giving me some thoughts into this. and I agree-- he seem to be very clear and firm in his stands and ability. He explained everythign very clearly and I think i will give him a try, My dad's condition , fatigue, headache and N/V is getting worse with losing weights, I think I couldnt' afford to switch him around at this time. I will gather his info in need after the surgery though. .... Dr. Chung suggest that my dad has to stay healthy, eat and not to lose weight and be ready for surgery. However, THIS IS MY CONCERN AS OF RIGHT NOW>>>
DADDIs condition scared me this past few days after Wedns talkign to Dr. Chung.... today is Sunday --- My dads keep complaining of headache, severe headache, and he felt his body so uncomfortable and fatigue tired... I can see the veins showing on top of his forehead - moving adn beating, in touching it i can feel the heart beat from the vein... I took him to the near by pharmacy to test his BP but it was normal..... IS THIS A NORMAL SYMPTOMS ? and HOW TO HELP HIM??.. He is right now can't sleep and just sit and couldnt' sleep sayign his body doesnt' feel right... ?. He is scared to go to the Emergency again, and I couldn't convince him too -- He  lost 4 lbs already in 4 days. and that is not good.. IS THERE ANY WAY TO RELIEVE HIS SYMPTOMS? I Tried to give him ice packs for his Headache, but not help much and I dotn' know wat to do for his body symptoms.. uncomfortable that he said he cant' explain.. He look so pale.. it is so heart breaking lookign at him.. I Wanted to give him some sleeping pills so he cna just sleep and forget the body symptoms.. but he is scared of the med also...?? Can you guide me..?..

JASOn-- please tell me more of DR. CHUNG... thanks everyone so much once again.

Re: MY DADDIE :( == hilar cholangiocarinoma

Hello Huong-My,

Sorry to be so late in posting a note to you , but I wanted to welcome you to the board (I am sorry you have a reason to be here) and tell you that we are all here to support you (as you can already tell I am sure).  I am a 3.5 year survivor of extrahepatic CC, so there is hope and you should always hold on to hope.

From the sound of your last post, I would suggest going to the emergency room.  The symptoms you are describing don't sound familiar to me in regard to this cancer and may be a sign of something else (perhaps vascular?).  it is important for your dad to stay healthy so that he can fight this disease and you should tell him that going to the ED is not a sign of weakness, but of taking control and getting things taken care of.

Please either go to the ED or call the doctor about his headaches and throbbing.

Sending good thoughts your way....Hugs.
-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 DADDIE :( == hilar cholangiocarinoma

huong-my, I have not heard of the headaches, but in my humble opinion, I would take him to ER. If he is not eating it IS very possible to loose 1 LB a day, It just happened to me with another Illness. It took 2 weeks of IV in the hospital to build me up enough to go home. He has to be as well as he can be for the surgery. PLEASE do NOT give him any Medication of any kind without first asking his Doctor as you could do damage. I know this is so hard especially when we reach a point where we have to tell our parents "THIS is how it is going to be". You have to give him lovingly, some tough love. I would take him to ER today or call his Doctor today! Be strong.

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 DADDIE :( == hilar cholangiocarinoma

Hi everyone== Thanks again for the response and support. I"m glad I join this forum that have such rich experience and knowledge regarding to this.

My dad's concern for is that if he were to be admitted to the hospital after the ER visit, would that affect his surgery date. which is on the 5/14. In addition his pre-operative clearance date is this following tuesday. The pre-operative clearane is when his primary doctor will look at his overall health with lab values and etc to determine if he is healthy enough for surgery. If this also got push back then it might affect his surgery date.

Re: MY DADDIE :( == hilar cholangiocarinoma

huong-my, It will all be up to the Doctor when he sees him. If Dad gets worse in the meantime, again it is up to the Doctor. Your Dad is suffering, the headaches could be from not eating. If he is loosing a pound a day that is not good as you are starving to death. Like I said I know. It took weeks to build me up enough to go home and it has taken 2 months to get back to normal, and I still get very weak. I am pretty sure they will not do surgery in that condition. They even had me on the cardiac floor as the first week they were afraid I would have cardiac arrest. I could not hold down even water and when I would start to talk I would get dry heaves. I am not a Doctor but having just gone through this I would guess in his present condition they would not do surgery but if he was in the hospital he at least would have a chance. Keep this in mind, when you get sick like this your mind is not clear and he will not be making the best decisions for himself. You become disoriented, and you feel your brain is not working. Like I said, I was just in that position and it is not good. Be strong!  P.S. My daughter pushed me the whole way and I would never have made it without her making the decisions, it gets that bad.

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 DADDIE :( == hilar cholangiocarinoma

As many have already said,  I would call your father's doctor and describe what is going on.  He may very well send you to the ER or hospital for more testing.
That gives the doctors the best chance to do what needs to be done to keep the May 14 surgery date.
I am glad that you were impressed with dr Chung; I have had 8 surgeries and he is the best surgeon I have been involved with.  I will be praying for your father and your family on the 14th.

Re: MY DADDIE :( == hilar cholangiocarinoma

HI Stan and everyone in the forumn. Update one DADDIE..
** We just met with DR. CHUNG and unforntunately Dr. Chung said my dad has to be on Chemotherapy, the operation "resection" would not go as plan b/c it seems the tumor is in the 'branch"... HE hope the CT will decrease the size to a resectable size.... ... I don't know what else to say, other than I dotn' know what to do now... .. I coulnt' ask any more question and would like to know how positive is this and should I get a 2nd specialist to determine the tumor site. I would like your advice on thiS? .... My dad sseem to be very weak for C-T , he had lost 10lbs and I can say can't walk right due to the tiredness adn the pain from The "EXTERNAL" tube that they placed in him to drain the bile since the "stent" doesn't work... --

I'm really frustrate right now... should I entirely trust on soley Dr. Chung...?? Is he workign with a group of specialist to decide on this??? and what is my best option after this?? Should I gather the data and pix and sent it somewhere else to confirm the resection descision prior my dad starting on chemo???.... --> We have a meeting with the "radiology dr" this afternoon to talk about my dad C-T plan and see if he is able to get the C-T... ...


If a second option is best, which is a great place that have team of expert on this and the resection, I really want him to be resect b/c the external drain seem to give him so much pain... Please help

Re: MY DADDIE :( == hilar cholangiocarinoma

huong-my, I am so sorry to read your latest report. First may I address the external tube. My Teddy had one and it really was more comfortable if you can hold it up a little by pinning it to a shirt under his clothes. Also it does pull a little on the skin and we found a cream at the Pharmacy to help with the irritation. I forgot the name but your Pharmacist can help you with that. It must be cleaned around the site daily then apply the cream. After a while Teddy was comfortable enough to golf with the tube. I would tell the ONC about the pain with the tube, maybe something slipped and it needs to be looked at.
As to what to do now, if you are unsure I do feel a 2nd opinion is in order. Not only will you feel more secure but you will never look back and question it. One more suggestion, when you visit the Doctors always have a list of questions ready to ask and then you won't forget anything. Wishing you the best on handling all this. Be Strong.

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 DADDIE :( == hilar cholangiocarinoma

My Daddi-->
Please give me some advice on this decision. I just talked to Dr.Chapman office and talked to nurse Velva specifically about my dads condition, she asked to send all his file and scan to the office. I would love to do so but before, I need to clarify something. Is my dad absolutely inoperable???. If he is, then the liver transplant would be the option to go, but what if the doctor will do the resection after CT/radiation? THen which is better, the resection or the liver transplant. Since i'm so new to this-- I'm not sure what to do in this decision. I do know one thing that the protocol for liver transplant is when patient is absolutely inoperable and should I just send my dads data in for Dr.Chappman to review and he will then determine from there? Dr. Chung which told me my dad tumor site is at the Y-site which is hard to resect, said that he want my dad to do Chemo and radiation and would review if my dad is operable or not later on. Should I wait for this, letting my dad go through this CT decision or should I just go straight to Liver transplant.?.. What if the size will go down and be resectable later, then is it a wrong idea to have the liver transplant be in process??>.. this is my biggest concern. Please respond