Topic: 38 year old friend with Cholangiocarcinoma

Hello...I'm new here.  I have a dear friend who has been diagnosed with Cholangiocarcinoma.  She is seeking options now...traveling to UCSF and Anderson for consultations.  The best so far is a resection of 75% of her liver.  Her tumor is deemed to be the size of a cantaloupe but she is only diagnosed at stage 1 or 2.

My friend is physically fit, 38 years old, and full of life and spirit.  Any thoughts or words of wisdom would be most welcome as this is new to all of us (her friends) and family.  One thing for sure...treatment will begin soon.  she's had 2 biopsies and is being pushed for surgery in September.

Regards,
Mo

Re: 38 year old friend with Cholangiocarcinoma

Mo,
Welcome to the club no one wants to belong to.  This is a great site for support and information and I'm sure you'll find help here. 
The key right now is to go for the surgery ASAP.  If your friend is eligible that's a gift as it remains the most effective treatment for this beast of a disease.  Do you have a surgeon with experience with this disease? 
While following that path you'll also have time to help with research for what possible additional steps you may all choose.
May she find the best care and have good results.
-Peter

Re: 38 year old friend with Cholangiocarcinoma

Mo,

This is great news.  If they think she is resectable, go and get it done.  After the surgery you will need to make some careful decisions.  Chemotherapy or not.  You may also want to look at some alternative therapies and certainly look through the website so you can get as much information as possible.

Keep us posted on what is suggested to your friend.  When we first began flying around and seeking out opinions for my brother, I took a tape recorder and recorded every conversation we had with a dr.  I would then type up everything and we could look carefully over the notes to make decisions.  Also, other members of the family who didn't go to the appointments could be fully updated.

Really the patient is the only one who can make the decision.  But it helps if you can read through things after the appointment.  It's hard to take in all the information especially in the whirlwind initial stages of this disease.  The patient, is sometimes intimidated and even overwhelmed by the amount of information.  This makes it difficult to decide the best thing to do.  Be sure to ask the Dr's you visit - how questions can be addressed, via email or possibly phone calls.  You will need to get a good amount of information before you make a decision.  It's much easier when you know you'll have someone you can ask questions.

Please let your friend know that she is joined by many on this site her age.  Unfortunately, by many younger (21 is our youngest) and also by many who are years out and still fighting this disease.  There is much hope.

Good Luck!
Stacie

Re: 38 year old friend with Cholangiocarcinoma

Mo,

I am 51 years old and had my liver resected last November 30th at University of Colorado Hosptial in Denver by Dr. Martin McCarter, and I was very pleased with his work.  They took half of my liver with my orange-sized tumor.  It took about two months to recover.  I would definitely go for the liver resection.  I would have your friend check out clinical trials, particularly the Davanat trial as possible treatment after surgery.  You can't get into some of the clinical trials if you've had chemo.  You can go to clinicaltrials.gov to get more info.  By the time you're on the chemical trial for what might be a cycle of chemo, you'll know if the clinical t rial is working.

I was on the Sorafenib clinical trial in March and April.  My tumors had grown back at my first scan after surgery in late February and doubled in size by early May, so the Sorafenib didn't work for me and had some strong side effects - rash, hand-foot syndrome.  Several other people on this site have been on the Sorafenib trial and I don't think anyone has had any success.  When they did my surgery, they found cancer in my lymph nodes, so they told me it'd probably come back.  I don't think they expected it to come back so fast.

I would read the blogs on this site, the info on the general info page , and as much of the discussions as possible.   This website has been so helpful and I can't thank Rick and Stacie enough.

I am on chemo now - Gemzar (gemcitabline) and Xeloda (capecitabine) - and it seems to be helping, particulary after adding the Xeloda.  At my last scan the tumor  growth had slowed substantially and my liver enzymes have improved as well.

Hope this helps.  Good luck.  Keep us posted.

-Caroline Stoufer  (Cell phone number 970-596-1068, e-mail: buckskin@ouraynet.com)

Re: 38 year old friend with Cholangiocarcinoma

Thanks for the responses.  As for my friend's doctor, she has visited both UCSF and MD Anderson in Texas.  She will be going forward with MD Anderson.  Last week, she had tests run and they want to run more tests....they see spots outside her liver (pancreas, intestines, I think).  If the tumor has metastisized, surgery will not be an immediate option but rather aggressive chemotherapy to stop the spreading.  She is considering going back for back to back tests rather than fly to Texas and have gaps between tests (days).  The first available date is the week of September 14 and the doctors state that the wait should not hurt her.

I did research  on a dendritic cells study being explored by a Dr. Gorter.  Although the article I have read pertains to other cancers (pancreatic, breast cancer), the theory sounds interesting and plausable.  Pharmaceutical companies are not interested because no drug is involved...it uses your bodies dendritic cells...You can view the article at www.odemagazine.com; current issue; cancer vaccine.  If you get a chance to read it, please let me know what you think.