Topic: need help for my dad

Hi... I am a young daughter of my dad is 84. My life was full of joy not too long ago. I have a 3 yr old boy and a 3 months old little girl. Haven't enjoyed enough the family time, my dad has jaundice about a months ago.  After all the blood test, ultrasound, ct, ercp, biopsy, came back said he has cc. doctor said he has cc. Dad has been always healthy in general. He has high blood pressure, but medicine controls well.

My dad is a very sensitive person so I haven't told him yet. This afternoon, we'll go to see the gastro doctor for results and next step. I will have to try really hard not to cry in front of them to make my dad nervous. He doesn't speak English, need my translation. I have been suffering the past 2 weeks, praying for better results. I couldn't sleep, couldn't eat well, and my life turned upside down when I heard this yesterday on phone with doctor. Everyday, my 2 kids, and doing more research of treatments, options been my main support.

I have a lot of questions, and need supports. I have checked out this forum last week and see people here are very warm and nice. Please give me some support. I love my dad very much. If there is anything in this world can help him, I'll go for it. Thanks everyone!

Right now, I am not sure because of his old age, 84 early next year will be 85, can he still afford to be operated even if he maybe qualify... ? The tumor is at the middle part of the bile duct, leaving the liver, where the Y joins. Other organs, doctor hasn't seen anything yet. The gallbladder also has something but the ERCP couldn't take biopsy. Doctor said too hard to go in and get sample.

If it'll be better off or worse off to go with Radiation and Chemo? I heard a lot of side effect for radiation or chemo, and very painful? He has lost 10 LB and seeing him so skinny and weak, I am so upset. He's very skinny to begin with, 133LB.

The worst part of cc is if we do nothing, he's going leave us so soon... I feel so helpless....

I am in NJ. Yesterday, I've called Sloan kettering in nyc requested to see surgeon: Dr Fong. I saw this name in this forum before. The nurse told me will review the record and let me know if will see Fong or not.

While my life seems in a big mess now... I wonder what is the next step for cc? How to start looking for treatments? Maybe just follow the gastro doctor's suggestion this afternoon? Anything suggestion for what I can start to prepare early will be really appreciated. I am trying all my best so that in the future, I won't regret I haven't tried hard enough. 

Thanks you everyone!!

Re: need help for my dad

Dear Lovedad, welcome to our extraordinary family but sorry you had to join us. I would see what Dad's Gastro Dr.  has to say about treatments versus age and the stage of the CC. So many things factor in here. After you see the Gastro Dr. he will probably reccomend an Oncologist then you certainly can make a decision to contact Dr. Fong. You are going to have to be very strong for your Dad so that he can be strong. You will draw your strengths from each other. Does Dad live alone?
Did they treat his Jaundice and how? I suggest you take a pad for notes, today. We cannot jump ahead of everything, first you have to hear the GI Dr. and it will be up to Dad how he wants to proceed. Please let us know how the Doctor visit goes today. You are not alone we are all here for you.

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: need help for my dad

Hi Lovedad,

Welcome to the site. I am sorry that you had to find us all and I am so sorry to hear what your dad is going through as well, but I am glad that you have joined us all here as you have come to the best place for support and help, and I know that you will get a ton of both from everyone here. I can sure relate to the suffering that you have gone through these last 2 weeks as I went through that myself with my dad too. This is such a tough situation that you and your dad are in right now, but here you are among people who have and are going through this as well and so know how you are feeling. So please, keep coming back here, let us know how things go for your dad and know that we are all here for you.

Please let us know what your dads GI doc says to you today and what he recommends with regards to treatment etc. Thats good that you have contacted SK and I  hope that Dr Fong will be able to see your dad. He has treated quite a few people here as well.

I know that right now your head is spinning with everything and what is going on. That is normal and I and everyone else went through that as well.  You are not alone now, we are here for you, we know what you are feeling and we care.

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: need help for my dad

Hi Lovedad,

I just wanted to welcome you to this site as well. I am sorry to hear about your Dad. Once he has seen the GI doctor and has an Oncologist, I think things will feel more in control. They will decide the best options for your Dad. I understand how you are feeling right now. My daughter, Lauren has CC. Your world stops and you feel so lost. But, you are not alone. We are here to help you whenever you need us. Please come back and tell us about your Dad and the doctor visit. Take care.
Love and hugs,
-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: need help for my dad

Hi LoveDad,

I too am sorry that you are in a position that you had to find this site, but glad that you did.  You will find much support here from both those who are going through this illness personally, and from those who support a loved one facing this illness.

My dear Dad also was diagnosed with this illness and while he is no longer with us on this plane, what I learned is that everyone's story is different.  Miracles are still possible and as long as there is breath, there is hope.

You and your father are at the beginning of this journey and as some of the others have said, it's a good idea to take along a pad of paper or a tape recorder so that you can play back the advice you hear.

Sloan Kettering is an excellent facility and based on your post, I already know that the love and concern you feel for your father will be the best medicine he can have.  I will keep you and your father as well as the rest of the family in my prayers so that he receives the best care possible and that you are all supported during this challenging time.  I know this is extremely difficult to face as a daughter, when your father's life is threatened, but know that your support of him will carry him and you will see how much of an honour and blessing it is to have the opportunity to care for your dad in his time of need.

God Bless,
Missing U

Re: need help for my dad

I agree with the others that you should wait to be referred to the oncologist (and perhaps other specialists in their group) to find out what ideas they have for your Dads treatment. My thoughts are with you. I know how much shock and fright you are feeling. I am struggling with the same emotions (including occasional panic). Like those who have been dealing with this longer, they say that once a plan is in place your "fright turns to fight". This even applies when the treatments are not curative. Best to you, and do enjoy your little ones! They need you too.
Willow

Willow

7 (edited by lovedad09 Sat, 01 Dec 2012 07:21:01)

Re: need help for my dad

It's too shock for me that I need a lot of support so that I can support my dad. Thanks everyone! Really appreciate it!!

We went to the gastro doctor yesterday. He told me the position of the tumor is kind of going along in the bile duct on both side the Y, and a main one on the junction.... it's not a good spot doctor said. I also saw this per my research and also not very good either.

But anyway, doctor referral us to see a surgeon doctor and got a Monday app. It's Dr. Diehl. My gastro doctor said Dr. Diehl is the best doctor. Dr. Diehl said it's mainly depending on where the tumor is and how it grows. Age is not the biggest concern. I am hoping my dad has a chance and can be operated. Praying again.

Gastro doctor said see the surgeon dr first. If he cannot do it, then oncologist. This Gastro doctor always try to help me by my will. A very nice doctor but it's may or may not be good since I am not a doctor. He should know more about the priority then I do. But maybe it's not  big deal for our situation. It may not be any difference in a few days.

My dad has blood test again since he still seems yellow. Doctor put only 1 stent on 1 side even blockage on both side. Said hard to place 2 stents...

We have not told my dad how serious it is yet. I am so sorry that I can't tell him but I would be more sorry if I have told him. He's a very sensitive person and I think he'll be much worse off if I told him right now. I'll wait and see what Dr. Diehl says first. Will keep you all posted after the app.

My mom and dad both live in my place right now. I didn't tell my mom the full story either. The better part is my dad can relax at home and see his 2 grand kids and all of us everyday. I am praying the happy days can be longer. Everyday is a gift. I hope he can fully enjoy the family time. 

Thanks again everyone!

Re: need help for my dad

Dear lovedad, first of all I want to say how happy  I am that MomDad are liviing with you makes things much easier. And Grandchildren/family are the best Meds. I am curious, the Doctor who placed the stent, has he had a lot of experience with this before? You also want to make sure that Dr. Diehl also has had experience with CC. It does take time for the yellow to leave. I too am praying for your family to have better tomorrows!

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: need help for my dad

Yes, it's great that my family and my parents are all here. I really enjoy everyday can see them. Hoping it'll last as long as possible.

My dad has jaundice for about 3 weeks before we got to the gastro doctor. I was in a big hurry to have doc schedule the ERCP to insert the stent. The gastro doc was recommended by dad's family doc, said top NJ doctor. But he didn't do my dad's ercp since we were in a hurry. It's one of his partners in the office. I kind of thinking if they have much experience. They said they have done a lot of ERCP and the stents. At that time, I don't see having much choices either. He's yellow, need to be taken care asap.

I trust doctors but also need to look out for my dad too. He's old and weak. All decisions need to be made very carefully. Thanks for the reminder. I'll pay more attention.

Re: need help for my dad

Dear lovedad
Your story sounds very familiar, as my husband also had jaundice after diagnosis and they were able to put only one stent in and were not successful with the second. In his situation - once he started chemo - chemo actually took care of jaundice problem, which what doctors were hoping for. Don't be alarmed that he stays yellow for a while. Do ask for copies of his tests and see how his bilirubin changes. If it is dropping each time - he is on the right track.
Hope it gets better!
Sincerely, Alla

Re: need help for my dad

tryingtohelp ----Thank you very much for the info! It's been 1.5 weeks my dad had the stent put in and still looks pretty much the same, yellow. sad How long did the yellow gone away for your husband? or it didn't go away until the chemo started?

We had the blood test last Fri. Gastro dr will call and see if the bilirubin will go down or now. He said should be. The dr didn't attempt to put the 2nd stent at all. He said 1st difficult, 2nd stent is temporary solution. I think when he took the biopsy, he kind of thinking the tumor is cancerous. sad



I'll see what the surgeon say tomorrow. Also planning to call Dr. Fong's nurse again for the reports that I have.

Is there a doctor for cc patient that can help selecting different treatments, evaluate pros/cons, side effects? Like a doctor in charges of the whole case for each patient? I feel so many things I need to do, but sure what to do first. sad

Thanks a lot!

12 (edited by Lainy Sun, 02 Dec 2012 21:23:49)

Re: need help for my dad

Dear LoveDAD, YES, everyone has a main Oncologist. That Oncologist can confer with other ONCs but he will be the one to order chemo/treatments or for surgery he will recommend an Oncology Surgeon. He will also be the one that will order LABS and then see your Dad periodically. My husband did not have chemo but the yellow took weeks to leave. I would think your next step is to get an Oncologist. All of Dad's Doctors will become his team. 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: need help for my dad

Lovedad,

Welcome to our family. You are so wise to be doing research and asking questions on this site. There is so much experience right here and everyone is so helpful. Sending prayers for your Dad and your family.
Lisa

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: need help for my dad

Lainy wrote:

Dear LoveDAD, YES, everyone has a main Oncologist. That Oncologist can confer with other ONCs but he will be the one to order chemo/treatments or for surgery he will recommend an Oncology Surgeon. He will also be the one that will order LABS and then see your Dad periodically. My husband did not have chemo but the yellow took weeks to leave. I would think your next step is to get an Oncologist. All of Dad's Doctors will become his team. Be Strong!

Thanks Lainy. I'll ask the gastro doc to recommend a oncologist anyway. Complex disease like this has to have a central point of contact. ... Do I need 2nd opinion for the oncologist? Sometimes, I am not sure what to trust or believe of doctors. sad

Re: need help for my dad

Dear love dad, Start with the one ONC but remember it is your right to get another opinion IF you want. You may just connect at first visit and that is good. Listen to your gut feeling, it is usually right.  You really need an ONC to take control of things like LABS, Tests etc. Like having everything under one umbrella. 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: need help for my dad

We came back from the surgeon today. He said CT we had before didn't have the injection (family doc ordered CT said kidney function number not so good so didn't have the injection) so it's not clear enough to be sure. His nurse said, we have to have CT with injection to show details.

Last Fri's blood work showed bilirubin was 30, worse then before the stent was inserted, 15!! I was so frustrated. I asked why, he didn't really explain why the stent didn't work. Anyway... he said since bilirubin is high, we need to redo CT with injection (become a have to now), he thinks the best is my dad goes to hospital staying a few days. They'll take care of the CT scan, jaundice together. said it's easier for my dad, and faster to get the result. I am not sure if it's any faster, but maybe it's easier for my dad.

Now i really need some advise.... we back to step 1 need to redo CT, and redo taking care of the jaundice. I am so frustrated. After all, we back to step 1.

The doc said since stent failed, they'll drain the bile from the back, like a bag on the body, drain the bile out. The scary part is, he may or may not need this kind of drainage, drain it outside the body, from now on. Does this sound normal? Why the stent is so easy to fail working or never worked at all? Does it mean the doc put the stent in has less experience? Draining the bile outside of the body is it a common or safe way? I am thinking from the skin, through many many layers inside.... go all the way to the bile duct... how can the tube or stent, whatever they use to drain the bile can stay where it is while going through the open skin? how to manage no infection? We are talking about from outside through human inside near the liver always have an open skin while a tube or stent is there.... I am kind of afraid of it, but I know if bilirubin is too high, it's life threatening. We can't wait on this.

Surgeon doc said, we need to have the CT first, and then drain the bile, then we can have the oncologist. He said if it's needed, hospital will send one oncologist during this hospital visit.

I am not 100% sure if I am heading the right direction. All of the sudden seems dad's case getting serious then before. I am so worried.

Re: need help for my dad

OK, first of all you can get an Oncologist any time you want! Next, I have never heard of draining bile from the back, did you mean the side? My husband had an external drain with a bag but it was on the right side. IF this is done insist on a radiologist doing the drain! Has this Doc ever done this stuff before?  Now remember I am not a Doctor but here is what I would do. When something feels wrong it usually is. I would find an Oncologist tomorrow and explain it is an emergency and perhaps he can get you in if not tomorrow in a day. A couple of days may not matter and if Dad gets more sick you take him to ER.
What Hospitals are close to you and do you know of anyone else who can recommend an ONC.  What is this Doctors name and have you Googled him for reviews. What the Doc should have said to you was to give you the name of an ONC to call.

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: need help for my dad

Lainy wrote:

OK, first of all you can get an Oncologist any time you want! Next, I have never heard of draining bile from the back, did you mean the side? My husband had an external drain with a bag but it was on the right side. IF this is done insist on a radiologist doing the drain! Has this Doc ever done this stuff before?  Now remember I am not a Doctor but here is what I would do. When something feels wrong it usually is. I would find an Oncologist tomorrow and explain it is an emergency and perhaps he can get you in if not tomorrow in a day. A couple of days may not matter and if Dad gets more sick you take him to ER.
What Hospitals are close to you and do you know of anyone else who can recommend an ONC.  What is this Doctors name and have you Googled him for reviews. What the Doc should have said to you was to give you the name of an ONC to call.

Surgeon doctor: Dr. William Diehl. It'll be in Morristown Memorial Hospital.

I'll ask for oncologist tomorrow from my gastro doc. and will make sure radiologist do the external drain.

I don't feel very wrong, but I don't feel everything goes very right either... I am feeling crazy too. I don't know why they did not recommend oncologist at the first place.... but I will make sure find one asap. Thanks a lot!!

Re: need help for my dad

OK, I just researched the Hospital and Dr. Diehl and both have good reviews. In fact he is highly rated. So, try to relax a bit. If you keep on being that upset it doesn't help the situation and you may want to ask your Doc for something to just take the edge off for you. You will wear down in no time at all. 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: need help for my dad

vedad....there is so much information coming your way that easily it can become overwhelming.  I feel for you.
Know that the bilirubin has to come down in order for your Dad to be treated with chemotherapy because; if the liver can't rid itself of the bile then chemotherapy would accumulate and cause great harm to your Dad.  Therefore, I would not worry too much (at this point) about the consultation with an oncologist, but rather focus on the successful drainage. 
Depending on the location of the tumor, stenting can become difficult or even impossible. In these instances an external drain is the next best option.  It has been tolerated by many others and provides for a great alternative for internal stenting.   
A CT with contrast allows for improved visibility of internal bodily structures and therefore aids the physician in determining the true extent of the disease.
I agree with Lainy in that you might want to take a deep breath and take it one day at a time.  Once adequate drainage has been achieved, your Dad will feel much better and the next step will evolve. 
Stay strong and know that we are here for you.
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: need help for my dad

Lainy --- Thanks a lot for the research! While so much going on, my 3 yr old had fever for 2 days.... I feel very overwhelming.

marions -- Thanks for the details. Dr. Diehl didn't explain much at all. less then 5 talking he stepped out. His assistant helped explaining things...

I'll see how today goes and keep you all posted. I got so much help here. Thanks a lot!!

Re: need help for my dad

2nd day in the hospital. 1st day CT, 2nd day nothing. Surgeon doctor did not show up, but the gastro doc stopped by. He said he talked to the surgeon doctor, and surgeon doc said cannot operate. Another heart broken news. I am frustrated why from the beginning till now, there is nothing, zero thing looks encouraging or less worse.

I asked for the oncologist. Gastro doc said tomorrow will have oncologist in hospital talk to us, family meeting kind of consultation. I hope that'll happen soon.

I ask for referral us to Sloan NYC, but he said if this surgeon said no, others will say no. He doesn't think it's worthy for taking my dad to NYC for 2nd opinion. Maybe doctors all see his new CT and situation showed really bad so he thinks not worthy to try 2nd opinion? But I won't and I can't stop trying.

Re: need help for my dad

love dad, I would wait to see what ONC says and why. Then if you want to it is still your right to get a second opinion. Ask questions until you feel you fully understand.
You might want to write some questions down so you don't forget!

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: need help for my dad

I agree. Take a deep breath and wait. You still dont have the full inderstanding of why they may not be able to safely do surgery and your Dad still has not gotten his treatment plan (at the current hospital) in place yet. It can take many days, often weeks to meet with each specialist and have all the tests done. Wait until you have talked to the oncologist.  Sometimes chemotherapy cam be a safer alternative rather than surgery (that was the case with my sister) is what will be recommended. Sometimes they recomend radiation. Unfortunately, most cases of advanced CC cannot be safely and successfully surgically treated right away and there are many other types of treatments they may recommend.
Also, if eventually you decide to get another opinion, the hospital can fax your Dads records (all test results and CT scans etc,) to the new Dr/hospital  his evaluation instead of physically taking your Dad there.
Take Care, Willow

Willow

Re: need help for my dad

Hang in there, lovedad. We are all here to offer support and hugs. I am sorry this has been so difficult for you and your family. Hopefully, a plan will be under way soon.

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.