December 5, 2010 at 6:13 pm #44605ronidinkesMember
My mother was diagnosed August 2010. We went to Johns Hopkins, Dr. Richard Schulick. She had a whipple with portal vein recontruction, very long 12+ hour surgery. At this time although she is stage 4, her scan was clean in October, therefore she is not interested in chemo at this time secondary to all the side affects. She is holding steady and is having scans every 3 months. This is a very complex disease and it creates chaos for everyone involved from patient to caregivers and family members. I just take it day to day, enjoy each moment, and am thankful for every second I have my mother. Stay in touch and good luck.
RoniNovember 24, 2010 at 6:57 pm #44604kristincParticipant
Julie, I was diagnosed Feb. 2010 and had a resesction and chemo for 4 months. I was in remission for 3 months and the cancer was present at my 3 month scans. I agree with everyone that you should go to a large cancer hospital. I get all my treatments at home but I have my doctor at MD Anderson write all the orders for chemo. I am doing just great and plan to have many years with my 7 and 12 year old. Best Wishes to you and your mom !!November 24, 2010 at 5:51 pm #44603varun_tholasiMember
I’m sorry about your mum! I just wanted to give you some advice:
1. Have you got a liver function test done recently after placing the external drains? it’ll tell if the drains are working, if her bilirubin is coming down which is important.
2. Is surgery possible if the bilirubin levels come down? is that the only reason she hasn’t been taken into surgery yet? find out from the doctor.
3. Find out from the doctor about stents to unblock the bile ducts, if they are required.. I’m not sure if they’ll stent the bile ducts before surgery.
4. If surgery isn’t possible discuss the possiblity of starting chemotherapy with an oncologist (bilirubin levels need to be low to start chemo).
5. Can you give us more information about your mum’s condition.. where exactly are all the tumors seen? what are her symptoms?
Be strong and always remember, never lose hope! My mum was diagnosed in 2007, and the doctors gave her 8 months but she went on for 3 years mostly with a very good quality of life! Also make sure you take a second or even a third opinion.
I wish you and your mom all the best!
VarunNovember 23, 2010 at 4:35 pm #44602andieParticipant
May I join everyone in welcoming you to our cc family.
My Dad was diagnosed in April after 2 months of painless jaundice. The past months have been a rollercoaster ride, but with the help and kindness of the people on here I’ve managed to not have a complete meltdown.
My Dad was told his case was inoperable, and chemo was his option once the bile level was under control. Despite 3 stents and an external drain over the span of 6 months, we never got to chemo as the bilirubin wouldn’t go down. September 27th we were told nothing else could be done and Dad had 3-4 months left.
Yesterday I had an email to say a Professor in Leeds was willing to see Dad, as after looking at his CT scan from August he would maybe have considered surgery. We are going to see him Monday. Hopefully there will be no change on the new scan, as it hadn’t changed when they compared it to his first one in March.
Never give up hope, always ask questions, and trust your instinct. I was not willing for the hospital to give up on my Dad. He still felt well at the time apart from the jaundice, which suprised the doctors. He has gone down in the last month but he will not give in and wants to see what the Professor has got to say.
I wish you and your Mom lots of luck, never give up hope.
AndreaNovember 23, 2010 at 3:34 pm #44601jennifersMember
My Dad was diagnosed in January, surgery not an option – he’s 59, so I know how you feel about them being far too young. Others are right when they say that it’s such an incredible shock at the beginning and hard to really digest everything being told to you. Once you have a plan, things WILL get better. I wish you and your family all the best and will be sending positive thoughts and prayers your way….
JenNovember 23, 2010 at 12:12 pm #44600gracefulmeadow86Member
Hi Julie – i’m relatively new here as well. My father was diagnosed back in May of this year and is also 57. I agree…57 is too young to die! Wish your mom the best of luck and that the doctors can help her beat this!November 23, 2010 at 5:58 am #44599tiapattyMember
Welcome to our part of the world, sorry you are traveling this road.
Does your mom have any other health problems? I am in Chicago and if you are in northwest Indiana you might want to ask LindaZ about her surgery and experience at Univ of Chicago on the south side of the city.
PattyNovember 23, 2010 at 12:39 am #44598gtm2009Member
As a fellow caregiver, I wanted to give you some advice.
1) Make sure she gets to a hospital who has treated this cancer before. I strongly urge you to take her to a National Cancer Center. I believe Mayo Clinic in Rochester MN has treated more cases than any other hospital in the world. However consider how easy it is to get to the hospital. We live 5 minutes from Winship/Emory. They recommended the same treatments as Mayo, so we opted with Winship.
2) Don’t let the survability statistics depress you. These 2 and 5 year statistics are based on treatements that were in effect that long ago. Many advances have been made since then. More are being made every day.
3) Our personal experience with this disease has been unbelievably good. My wife was diagnosed a year ago. Since then she’s been treated with radioembolization and Cisplatin/Gemzar chemo. Today she has less cancer than she did when she started treatment. She’s been off chemo now for 8 weeks and today her doctor gave her a 3 month extension of her chemo-free vacation. She’s being treated by Dr. El-Rayes at Winship at Emory University Hospital.
4) NEVER give up hope.
5) TAKE CARE OF YOURSELF!!!! 40% of all Caregivers die before the person they are taking care of. (I’ve been told that by several reliable sources). Bottom line is that if you aren’t breathing, you are of no help to your mother.
6) Ask questions to your doctors, nurses, EVERYONE
7) NEVER be shy. The only stupid questions are the ones you don’t ask.November 22, 2010 at 11:59 pm #44597highsmithMember
Welcome! Like Jathy1125, my dad is alive because of Barnes Hospital in St. Louis. They have a large liver speciality and world class doctors. My dad is
alive today only because of the people at Barnes.
My dad, too, had clotting issues, which can be overcome with some medications, but, like you said, the resection still needs to make a difference if they overcome the clotting issues. My dad had stents in for three weeks to get his bilirubin to a reasonable enough level to do the Whipple, which is a surgery you will find many on here have had and gotten great results with.
The amount of information here is overwhelming at first, but keep reading and ask questions! It is a gold mine of answers!!
StaceyNovember 22, 2010 at 10:29 pm #44596jathy1125Participant
Hello Julie, sorry you had to find this site. I am a cc survivor. I live in southern Illinois and am alive today because of Dr. William Chapman and Barnes-Jewish Hospital in St. Louis, MO. Barnes and Mayo-Clinic are both top hospitals for cholangio, it just depends which part of Indiana you are in. I was 53 when I was diagnosed and my only main sympton was being itchy. My tumor was inoperable and my only hope was a transplant. I had to do chemo, chemo pump-radiation and oral chemo before I could qualify for transplant. I ended up having 2 transplants. I was given the last rites twice. I am alive and celebrating my first healthy Thanksgiving in 2 years!! Thanks to God, he put me in the best care for cholangio. Feel free to e-mail me for more info or numbers if Barnes is closer for you. There is hope and lots of prayers going your way, I am proof of miracles. CathyNovember 22, 2010 at 10:03 pm #44595gavinModerator
One question that I would ask of the doctors in Indiana who are treating your mum right now is how experienced are they in treating patients with cholangiocarcinoma? Getting another opinion for your mum sounds like a good idea if possible, and there are people here who have been seen at the mayo Clinic. Here is another list that may be iof interst to you.
Did your mums doctors talk with her about her options if they can get the bile flowing again? I know it might feel like there is no hope here right now, but please do not give up. Lainy is so right when she talks of how you will feel better once a treatment plan is in place for you mum. I felt like you did when my dad got his diagnosis of inoperable CC. So much to take on board anhd deal with in such a short space of time and it was hard. But then my dad got started on his PDT treatment and the fightback began. He felt better that they were doing something for him and I felt better as well. Please do not give up hope.
My best wishes to you and your mum,
GavinNovember 22, 2010 at 9:47 pm #44594ziggydogParticipant
Hi Julie – I am a new member also and feel very confused myself. Use this site to help you understand things. I have found great support here already. My husband is 48 and was diagnosed in August. The questions that the moderators and other members ask has helped me focus each day. My thoughts are with you – ziggydogNovember 22, 2010 at 9:01 pm #44593lainyParticipant
Hello Julie and welcome to our wonderful family. We are so sorry to hear about your Mom. I agree with Gavin about learning as much as you can as the more you learn the better advocate you become. And yes, to hear this diagosis is like a bolt of lightening hit you. I promise that after you see the Oncologist things become more focused and when a game plan is set in place you are ready to fight. In the meantime, if you go to our search engine at the top of the page, you can type in any word like, “clogged Bile duct” and a whole bunch of Posts will come up and just seach until you find your answer. I am sorry you had to find us but glad you did. Please keep us posted on how Mom is doing.November 22, 2010 at 8:59 pm #44592julieMember
We live in Indiana, but I am hoping to talk her into going to Mayo Clinic…
No surgery because of the bile and if that were to get into other organs, she would get infections. Plus we have to factor in the fact that she is not clotting…it seems so hopeless.November 22, 2010 at 8:52 pm #44591gavinModerator
Welcome to the site. Sorry that you had to find us all and I am sorry to hear about your mum. But I am glad that you have joined us all as you will get a ton of support and help from us all. And as you have so many questions then please feel free to ask them and we will all help if we can.
Can you give us some more information though about your mum and her diagnosis. Where was she diagnosed and where is she being treated right now? Seeing as your mum was diagnosed only last Sunday I can so understand how overwhellmed you are feeling right now. Hearing the news of your mums CC and then having to deal with all the stuff that goes with it is so hard and I felt the same when my dad was diagnosed back in 2008. But we are here for you and will help if we can.
Has your mums doctors ruled out surgery and if so why? And have you thought about seeking another opinion? I am hoping that they can start to get the bile flowing first off, and then did the doctors tak about putting in a stent of some kind? Apologies if you think that I am just adding to things by asking some questions here, but if you could give us some more info then that would help. I know that others will be along very soon to also help you as well.
My best wishes to you and your mum,
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