Topic: New Member

Hello.  Where to begin?  Last week, my 56 year old mother was diagnosed with cc; a tumor was discovered on her liver while undergoing gallbladder removal.  Although my mother has lived with ulcerative colitis for as long as I can remember, this was completely unexpected.  The community hospital oncologist staged her at stage 4 without any explanation and said that there is no hope.  Obviously, we will not be seeking treatment from him.  Mom does not seem very well due to the invasive nature of the surgery.  However, we have an appointment at USC-Keck on Monday.  My parents and sisters live in Los Angeles while I live in the Cleveland, Ohio area.  I put everything on hold and came home almost immediately.  Does anyone have any advice or encouragement especially as we head into our first consultation?  Thank you.

Re: New Member

Dear Bananagirl, welcome to our remarkable family but sorry you had to find us. You are already doing the best and right thing by getting another opinion. We just don't give up around here! Of course there is HOPE, just read our posts, HOPE is our middle name. You will feel better when you get that second opinion and a game plan is set in to place. In the meantime, try to read up on CC as knowledge is the best tool we have for fighting it. I know others will be chiming in as you have come to the right place. Please keep us posted on Mom's progress as we truly care.

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: New Member

Thank you so much.  I am hoping Keck can give us a better idea of what is going on.  I feel guilty but I know I can't stay here in L.A. forever.  Does anyone have a laundry list of questions that should be asked during the initial meeting?  I've printed off some general "You've Been Diagnosed With Cancer" lists, but anything more specific to CC?

Re: New Member

Hi Bananagirl, I too am a new member. I would first ask what kind of CC. There are 3 different kinds. It seems from the 3 opinions we got, they all agree that gem/some kind of "platin" are the #1 chemo drugs to start with. I was told that 50% of CC patients respond to them well. My husband unfortunately did not but is on Xeloda which is an 5-FU drug (there are many different names). He also was not a surgery candidate. Stage 4 CC. READ everything you can about this disease. Knowledge helps and going to the appointment with an ipad or notebook to keep track of all that is discussed. I also keep a daily log of how my husband is feeling, his weight, schedule for meds. This is very helpful mostly when you go for other opinions. I would go to the largest/best reputation cancer center that is reachable. This website has helped me emotionally and medically. Good luck. Susan

Re: New Member

Hi bnanagirl,

Welcome to this site, but I am so sorry you had to find us. I too feel you are on the right track to seek a 2nd opinion when a doctor says there is no hope and doesn't even try to help. I agree with Susan that you should seek the largest, most reputable cancer center that is very experienced with cholangiocarcinoma. I think it is up to the oncologist to decide which chemo will work best for each patient. In my daughter's case, she has always participated in clinical trials when offered to her. If something doesn't work, then there is something else to try. Make sure to ask for pain meds if needed. The most important thing is to find a doctor you trust to be looking out for your Mom's best interests, talks and explains everything to you so that you understand, and is compassionate. I was excited when I read you were from Shaker Hts. I would have suggested for you to take your Mom to University of Michigan for treatment. My daughter gets the best care there. But then I see she is in California, so that wouldn't work. I know Marion will probably be around to direct you to the best cancer center in Cali. I think everyone will feel better once you find a cancer center and oncologist you like. All the best to you and your Mom.

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: New Member

Hi Bnanagirl,

I'm truly sorry to hear about your mother. I too have had ulcerative colitis since age 16, now 53, and I now know that it is a risk factor for cc.

I live in SoCal, and as this has evolved, have been seen at a number of community hospitals, UCLA, and USC. As a patient, my opinion (and that of my primary care doctor) is that USC is currently the best place in the the LA area for treatment of this disease. I have been in treatment there for 16 months. If I may ask, who are you seeing initially? Do they have your mother's previous records? Yes, it sounds like you need many questions answered. There are a number of good people at Keck who are very familiar with cc, and should be able to give you more thorough answers.

I know my way around USC. If I can be helpful, please let me know.

mparsons59@gmail.com

Best wishes, Mark

Re: New Member

Thanks everyone.  My mother's initial appointment is with Dr. El-Khoueiry.  Hopefully we'll know more after this first appointment.  I am apprehensive though as I cannot stay here in L.A. forever.

Re: New Member

Hello... So sorry to hear about your Mom.  My Mom passed from it and my brother has it.   My brother was also sent to USC which did not end up being his place of treatment.  However on the other hand my Mom was treated by Dr Youram Nassir out of Los Angeles.  He is absolutely one of the best doctors as far as bile duct and the care and dedication from this doctor is unreal.  Again so sorry.

Annie
My momma may she rest in peace after her short but courageous battle with CC.  My brother my hero, may he fight CC with all of his strength.

Re: New Member

bnagirl...it helps to prepare questions in advance as well as taking notes while consulting with the physician. You are in good hands.
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: New Member

Hi,

I think Dr. El-Khoueiry will be a good consult for you. He specializes in biliary cancers and has done significant research in the area. I recall that several people on this board have been treated by him.

I know that your mom is trying to recover from a cholesyctectomy, but the big initial question is whether she might qualify for surgery. With this cancwr, that offers the best chance for more time with good health.

I hope you get the answers you need.

Take care, Mark

Re: New Member

Thanks.  The oncologist at the community hospital said she is not a candidate for anything but palliative care.  Obviously, we look forward to consulting with someone with more experience.  Thanks for all of your encouragement.

Re: New Member

Let us know how your consultation goes. Everyone here believes in second opinions with this complicated disease. In 2011, after I was put on palliative care and told they would not do surgery, folks on this board urged my wife to get a second opinion at USC. Within days I was in surgery.

Best wishes, Mark

Re: New Member

Hi Bnanagirl,

Welcome to the site. Sorry that you had to find us all and I am sorry also to hear about your mum. But you have done the right thing in joining in with us here as I know that you'll get a load of support and help from everyone here.

Not much I can add to what the others have said already but I wanted to welcome you here. I was my dads carer during his fight with CC and from what you have said so far, it sounds like you are so doing the right thing. It can be hard sometimes remembering info and questions you want to ask at the app so writing them down is very good. And also, writing down what responses you get is also good, or even recording the meeting if you can so you can listen to it back again. Quite a few times I forgot some questions to ask and what responses I got, especially during what can be a stressful time.

Do keep coming back here and ask questions you have and we'll try our best to answer them. I hope that you get some good news at this app and please let us know how your mum gets on. We are here for you.

My best wishes to you and your mum,

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: New Member

Hello Everyone, I'm a new member as well, my name is Faith.  I was first diagnosed 11/2/11 and was seeing a hematologist/oncologist because my body wasn't absorbing the iron I was intaking.  I had 2 blood transfusions and an infusion of Feraheme in August 2011 and was told than I didn't have cancer but after the treatment I was then diagnosed with cc.  I had a hole put in my chest to drain my liver and they don't use anesthesia for this procedure they stab at your liver until they find an open bile duct.  I had a tumor blocking my bilary tree and the doctor started me on Gemzar and it reduced my tumor to where I was able to receive a stent in my tree and lose the bag outside my body.  Gemzar quit working so the doctor put me on Xeloda which made me feel awful every day.  I went for a second opinion because I got tired of hearing I had lived longer than they expected me to and found a great oncologist who put me on oxaliplatin and 5-FU.  I work for several epidiologists and medical doctors and so I have a doctor at work to whom I'm able to bounce things off of and she has been diagnosed with breast cancer 2 years ago.  My cancer markers went from 1925 to 28.  I see her every week rather I get treatment or not to make sure my body is on track to receive treatment.  My past 2 visits my liver phosphates are up to 175 and so I go for an ultrasound on Monday.  I get CT scans about every 4 months and I get my stent replaced about every 3 1/2 to 4 months.  My cancer is treatable but not curable.  My cancer has also metatized to my lungs. Back in November 2012 my liver specialist told me my cancer is slow progressing and he didn't see why I wouldn't live to be 80 provided I continue to response to treatment.  I hope my story helps others because this disease doesn't care who it effects and how fast it decides to grow.  If I can help one person I am doing well.  I'm doing well so far and I've learned pain is part of my life so hang in there whoever reads this and Thank you.

Re: New Member

Faith, if that is your proper name you were aptly named! Your faith is extraordinary and you are giving a ton of faith to others. You have really been through it all and your attitude may get you to 100, we don't listen to statistics anyway cause they are not about our super heros on this site. I am so glad you have joined us and look forward to reading good reports!

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.

16 (edited by lturpin Sun, 10 Mar 2013 18:43:22)

Re: New Member

Faith

It was very encouraging to read your post.  We all need to have the hope and faith that you have.

After having an unsuccessful resection in December of 2011, I am now waiting to see a specialist in Toronto in 2 weeks.  I have been doing quite well with the Xeloda/Gemcitabine treatments.  I am starting round 15 on Wednesday.  The tumor and lesions are all shrinking slowly.

I am hopeful for good news when I go to Toronto.

Thank you for the encouraging words.  Good luck to you.

HUGS!  Laura