1 (edited by caretaker Fri, 28 Mar 2014 22:04:42)

Topic: Our story

I have been reading your posts on various CC subjects while waiting for my registration to be activated. Suddenly, I was not alone. I am very grateful that this community exists. Here is our story:

9/20/2013 –It all started when my husband went to his primary care physician to check a shoulder pain caused by a tennis injury. While there, the doctor also did a blood test. The liver panel came back elevated. My husband received a referral to a GI doctor part of our insurance plan.

9/24/2013 CT scan done and a heterogeneous low density “mass” was observed in the liver measuring 2.6*2.4 suspect for metastatic lesion.
10/21/2013 – CT guided Biopsy was performed but returned negative results to indicate the mass was suspicious for an intrahepatic cholangiocarcinoma.
No other tests were done but awareness should have been on the doctor’s side since my husband had a history of colon cancer and he had surgery done in 2006.

12/09/2013 – Blood results continued to show abnormal values for the liver. On 12/09/13 my husband had another appointment with the GI doctor who at the end of the visit recommended that the patient returns in 4 weeks!

After the doctor’s appointment my husband’s condition deteriorated fast – he felt tired, stomach issues and Jaundice started to be noticeable. He called the GI doctor and on 12/17/13, my husband was admitted in the hospital. MRCP performed indicating hilar cholangiocarcinoma.

He was released from the hospital with Jaundice, bilirubin reaching 2 digits level. We received a referral to the Liver transplant clinic in Los Angeles. Visit with the doctor at the liver clinic – we were told liver transplant was not an option. But there was hope the tumor was resectable .
On 12/26, the surgeon provided "guarded guidance" the tumor might be resectable. No appointments were available with the surgeon until 1/13/2014.
In the meantime, on 12/26/13, the GI doctor attempted an ERCP procedure. Procedure failed.
On 12/29/2013 - A drain was placed on the right side. Within 24 h there were complications as the drain hit a vein and my husband was experiencing heavy bleeding. The drain was replaced on 12/30 in the most painful procedure my husband ever experienced. I am questioning if they gave him enough sedation or what else went wrong?

On 1/4/2014, the drain was re-positioned. On 1/6/2014, he was released from the hospital with a bilirubin level of 29.2
He was having visible side effects of the medication –nausea and violent vomiting. Within 5 days he lost 10 lb. Week and dehydrated he checked into the emergency for 3 days.
On 1/13 we went to the appointment with surgeon in LA. The tumor was resectable but in order to have the surgery we were told the bilirubin needs to be at 2. Another drain was placed to help with the bile drainage in the left side of the liver.  Over the next month, we were in and out of the emergency room as my husband got severely dehydrated due to the side effects of the pain medication. He continued to lose weight.  Sept 24,2013 he was 232 lb, now 179 lb.
1/22/14 - good news PET scan does not show other metastatic areas.

On 2/4 the drains were changed and again re-positioned.

Feb 24th, we met again with the surgeon only to be told a selective portal vein embolization was an absolute pre-requisite to the surgery now at least two months away.
Kaiser refused to pay for a second opinion outside the plan. That decision did not stop us to seek a second opinion with Dr. Genyk (mentioned several times on this site). Dr. Genyk had a total different opinion from our plan’s doctor regarding the surgical approach and the segments of the liver which need to be removed. We are stunned!
We cannot go out of the plan as we belong to Kaiser. But I feel they delayed the diagnostic, the procedures, and now the surgery approach is very different compared to the surgeon who is an authority in this field.

It breaks my heart and spirit to see my husband so week, so tired so close to a curative approach but so far due to the boundaries of our health insurance provider.

Please, help if you have any advice.
Thank you,

Roxanne

Re: Our story

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.

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: Our story

Roxanne, 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!

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: Our story

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,
Willow

Willow

Re: Our story

Roxanne -
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

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Our story

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,
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: Our story

Hi 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

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: Our story

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.
Porter

Hope, love, strength...2013 and for the years to come, Porter.

Re: Our story

Hi 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.

Re: Our story

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.
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: Our story

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

Re: Our story

Dear 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!

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: Our story

Caretaker....fantastic news.  A tidal wave of good wishes is heading your way.
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: Our story

Roxanne,

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,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Our story

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,
Chrisna

16 (edited by Willow Sun, 30 Mar 2014 22:39:42)

Re: Our story

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

Willow