Odie

Hello…
I also had extrahepatic Cholangiocarcinom… specifically perihilar.
Mine was also caught early with a staging of T2aNOMO…But after surgery I had a positive radial margin with a “small focus” of cancer…(Therefore possibly microscopic cells left behind.)
My surgeon and my oncologist are both specialists for Cholangiocarcinoma at USC Keck in Los Angeles, California.
o   I was also put on the oral chemo drug XELODA (Capecitabine), along with an intravenous chemo drug called GEMZAR.  (Protocol = Infusion once a week and the rest of the week the oral drug. Two weeks on and one week off.)
o   The XELODA-GEMZAR treatment was for approximately 4 months, followed  by a 5-6 week treatment of radiation along with a lower dose of the oral XELODA.

My oncologist, Dr. El-Khoueiry, stated the pill form of chemo XELODA (Capecitabine) is the worldwide standard currently.    The U.S. is able to nuance the treatment a bit.  My doctor took part and helped develop the study called SWOG S0809…  (Southwest Oncology Group developed  and tested using a combination of these 2 chemotherapy drugs, followed by radiation.)

I’m not sure this 2 drug protocol would be available in Australia… But perhaps asking for the possibility of radiation after Xeloda to help clean-up any leftover microscopic cancer cells, etc.

I had 3 cycles of Gemzar, but my white blood count kept dropping to a dangerous level even after lowering the dose 3 times. I had to discontinued the Gemzar and I continued with the Xeloda alone, and they eventually increased the dosage of Xeloda.

I’ve been scanned every 4 months since completing the chemo and radiation treatment, and all scans have been clear. I am staying positive that this trend will continue.  In October will mark 2 years since surgery.

My advice to your sister: STAY POSITIVE…. She should develop a daily positive mantra she continually says silently to herself throughout the day… especially during times where she may be feeling more anxiety, etc.   This really helped me, and brought a sense of calmness when I was feeling over-worried or anxious.  Staying positive is half the battle.  She CAN beat this!

Here is a link to the SWOG study if interested:
https://pubmed.ncbi.nlm.nih.gov/25964250/   SWOG S0809: A Phase II Intergroup Trial of Adjuvant Capecitabine and Gemcitabine Followed by Radiotherapy and Concurrent Capecitabine in Extrahepatic Cholangiocarcinoma and Gallbladder Carcinoma

Best of luck to you and your sister!
Laurie

Congratulations on your 7 years! Fantastic!  Thanks for posting and sharing your story… It really helps install hope and gives a boost to my daily positive mantra about beating Cholangiocarcinoma!

In July I will be one year post treatments for peihilar CCA… and I am staying positive that my good health and NED will continue.

Thanks, and congratulations again!

Laurie

Hi Donna…

Sorry for the time laps in the response. I’m just reading your post now.

I also had a Klatskin tumor… Found with ultrasound, and then MRCP confirmed.  The ERCP showed narrowing, but brushing biopsy was negative.  More than 50% of the time it is a<span style=”text-decoration: underline;”> false negative</span> because CCA is hard to diagnose.

I also had a PET scan that did not show anything… <span style=”text-decoration: underline;”>But my stints obscured the view in that area</span>.  This may be the same for your father.

I had a second ERCP with more extensive brushing, and that time it came up positive for Cholangiocarcinoma.

I was able to have a liver resection and the size of the tumor was 1.4 cm  (Yet it had not shown on the PET scan.)

If his CA19-9 is elevated and continues to elevate this would be a sign of something.  The CA19-9 can elevate from inflammation anywhere in the body (such as from an infection), but usually drops back down.    Going from 600 in 2018 to 17000 now I don’t think is normal. (But I am not a doctor)

I agree with Mary’s post and suggestion… It is VERY important to get a second opinion with a specialist.

Best wishes to you and your dad!

Laurie

Hi Arieolskie,

As Mary noted, there is a list of “provider specialist” on this website.  To find it go to the “Newly Diagnosed” link in the top menu bar, and then select “Find a Local Specialist”.

I also was treated in the Los Angeles area, and was treated at USC Keck Hospital by the surgeon Dr. Sujit Kulkarni and the oncologist I am working with is Dr. Anthony El-Khoueiry.  Both came highly recommended.

I have been going to USC Keck for all my healthcare needs ever since I was diagnosed with DCIS breast cancer in 2014.   So the decision to stay at Keck was pretty easy.

I was at USC-Keck when a basic blood-test detected high liver enzymes, and then future tests/scans/ERCPs at USC-KECK diagnosed perihilar Cholangiocarcinoma.   Dr. Van Dam was the doctor for my ERCPs and placement of stents.  He was the one to recommend theses specific doctors as part of my team.   I was very happy to see them listed on the recommended specialist list on the CCA Foundation website.  The other surgeon that was highly recommended was Dr. Yuri Genyk.    There are also 2 other KECK doctors listed, but I am not familiar with them, but if they are on the list, I’m sure they are excellent.   FYI….I had a second opinion video consult with a doctor at Mayo Clinic in Arizona, and he said it is really hard to make it onto the “provider specialist” list on the CCA website.

It is great that you are talking to more than one doctor and it’s important to get a feel for who you and your Dad would like to work with.  I can tell you that KECK hospital is great, and the care I received there was top notch.

Good luck to you and your Dad in making this decision and best wishes for much success in your path to beat this disease.  To both you and your Dad… Stay strong and stay positive!

Laurie

Hi Bighorn 67,

I recently joined the discussion board and was reading through everyone’s stories.  Yours caught my eye because I was also treated at USC-Keck ,but by surgeon Dr. Kulkarni… also a gifted surgeon.   I do not have IHCC but Perihilar Cholangiocarcinoma.  I placed my story under the “Introduction” Discussion Board if you want to read it… It’s near the top.  In short, in October about 80% of my liver was resected over 2 different surgeries.  I had all clean margins but for a small focus on the radial margin of the posterior duct.  Microscopic cells may still be lingering… So I am on a bit more aggressive chemo regimen of Gemzar and Xeloda for 4 months, and then will follow with 6 weeks of radiation along with still taking the oral Xeloda. My oncologist is Dr. El-Khouheiry, is he is also at USC-Keck.  He was one of the clinical trials designers and lead authors of this particular regimen called S0809, so I know I am in good hands.  He has had to tweak the dosage of Gemzar a bit because during my first 2 cycles my WBC kept dropping too low.  I just started my 3rd cycle and hopefully he has found the magic number for the dosage so I can have the Gemzar 2 weeks in a row as designed.

If you read this, I was wondering how you are doing now that all your treatments are over?  How did you handle the radiation?

I hope you are on a clear road to recovery!

Best wishes,

Laurie