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Dear Chrisna,
So sorry about your best friends diagnosis. This is a scary diagnosis and you have come to a great place for support both for your friend and yourself.
Try posting your friends story as a new topic in ‘introductions’ and give a little info about your friend. Also, use the search function to look up discussions about anything. Lastly, look at the free E-book that answers 100 questions about biliary cancer:
This booklet is invaluable to all touched by the disease of Cholangiocarcinoma. We hope to have this booklet to be on display in all oncology offices treating cholangiocarcinoma patients worldwide.
Expect translations in Spanish, Portuguese, Japanese, Chinese, and Korean within the near future.
The e-version is free of charge to you.
Please know that the cost of the hardcover book ($25) helps defray the printing and shipping expenses.http://www.cholangiocarcinoma.org/book.htm
Hello everyone!
I am contacting you from NW Ontario, Canada. My best friend has been diagnosed with cholangiocarcinoma, ( apparently an adenocarcinoma), and I am here because I have read how you all support each other. I do need such support and in turn I want to help others, who have to face this horrible disease.
I am bursting with questions, but many such questions may have been answered in some of the posts. Please bear with me as I have not read everything on this site.
Any and all advise is very much appreciated!!!
Thank you,
ChrisnaRoxanne,
You have been given some good advice and are headed in the right direction. Good job. Wishing you the best of luck on his surgery. My thoughts and prayers are with you too.
Love & Hugs,
DarlaDear Roxanne, YEA!!!!!!!!!!! Good decision, you learned fast little grasshopper!
Prayers coming your way for a successful surgery and may God come through the hands of the surgeon. Please let us know the date and you WILL feel us all in the room with you!3/28/014 Update – Surgery scheduled for 2nd week in April with Dr. Genyk.
Kaiser doctor mandated selective portal vein embolization before the surgery. He refused to do the surgery if the PVE is not performed. My husband feels he is too weak to go through this procedure and the two months delay of the surgery.
We opted to leave Kaiser and have the surgery with Dr. Genyk.Roxanne
Roxanne,
Welcome. I am so sorry to read about your journey so far, but I am happy that you have found a solid second opinion. I will be praying you get the approval for surgery at USC ASAP.
LisaHi Roxanne,
Will you go to kaiser sunset for surgery? I forget the name of my moms surgeon. We just called him batman, because he’d swoop in to make a visit bet was not around much for questions. We would always go down to USC to see doctor lenz for second opinions and kaiser did a good job following their advice.
Hi Roxanne here is another warm welcome heading your way. Sounds like you guys have been through quite a lot the last few months. I wish you and your husband the best of luck! Many hugs and blessings to you both.
PorterHi Roxanne,
Welcome to the site. Sorry that you had to find us all and I’m sorry also to hear about your husband, but I’m glad that you have joined in with us all here as you’re in the right place for support and help. Thanks for sharing your story and what your husband has and is going through, you both sure have had a lot to deal with haven’t you.
If we can help in any way we will and please let us know how things go for your husband. You are not alone, we are here for you.
My best wishes to you and your husband,
Gavin
Roxanne….already you have obtained an expert opinion and I believe that you have a good chance of obtaining authorization for a resection at USC. Based on my personal experience with Kaiser you might want to see if you can have the Kaiser surgeon involved. He/she may support your decision of going outside the Kaiser system. Good luck and please keep us posted.
Hugs,
MarionRoxanne –
Welcome to the family. You certainly have gone through the wringer with all this. I had Kaiser many, many years ago and they drove me nuts. As a nurse I knew what my kids needed and until my son nearly died from an asthma attack, I couldn’t get them to give him the meds he needed. I learned from a friend of mine that they often deny the first time you ask for anything but the more times you appeal then the better the chance is to get them to say yes (kind of stupid but I guess they figure they can save money by saying no). As I like to say be the squeaky wheel and bug them as much as you can.
As for getting the bilirubin down under 2, our doc said that it should be under 10 (I guess maybe the “rules” differ from surgeon to surgeon) so my husband had his drain placed 4 days before surgery. He too had complications from his of dehydration and a low-grade infection.
The biggest thing to do is really try to keep him hydrated. (I know easier said than done). Remember that anything liquid at room temp counts at fluids so not only water but jello, ice cream, soups, Gatorade, anything like that….as long as it doesn’t have caffeine. Also need to try to keep protein in him. Again easier said than done. A couple of tricks I used was to make protein shakes (frozen fruit, ice cream, plain yogurt, milk all blended and you can add protein powder). Also you can make jello and substitute the cold water with some sort of clear protein drink (Ensure Clear or I found a protein drink called IsoSource at the pharmacy). It sets up the same as regular jello and tastes the same but is fluid and protein.
Keep us posted and remember we are always here.KrisV
So sorry for all you are going through to get the best care for your husband. Just want to mention that UCSF is a good place for CC too.
As an example, my good friend said complicated heart surgeries get referred outside the the Kaiser system to Mercy hospital in Sacramemto all the time because they have a great heart surgery program there. She is a cardiac surgery ICU nurse. I imagine there might be a way to get referred to a top liver surgery center outside the Kaiser system if Kaiser doesn’t handle a lot of CC-related resections. I really don’t know though. Its a full time job managing the insurance sometimes.
Sincerely,
WillowRoxanne, I just found this older post for you to read:
My husbands oncologist is Dr. Anthony El-Khouiery at University of Southern California, Norris Cancer Center. He is one of a handful of oncologists whose area of research is CC. He travels the world going to meetings about Hepatobiliary tumors. He is also a really great guy and a straight shooter.
His surgeon was Dr. Yuri Genyk at University of Southern California. This man not only has miraculous hand, he is also a very dedicated doctor. I cannot say enough about what a great job he did in making my husband cancer free. He was in surgery for 17 hours!
Dear Roxanne, welcome to our extraordinary family and I am so sorry for all you both have been through from the beginning. A lot of things did not seem right to me but the past is the past. Kaiser is not known to be an easy company to work with. You might ask your ONC to go to bat for you. I am also wondering if you called Kaiser would they give you a list of Surgeons who perform CC surgeries. Then we can check out that list. I know others will come along with some suggestions, you are not alone! Please keep us updated as we all truly care.
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