Topic: 3 year old with cholangiocarcinoma

my daughter jus got diagnosed at childrens in la
has anybody heard of this is a child--they are stumped-trying to find answers but have never seen this before
cindy mays

Re: 3 year old with cholangiocarcinoma

Dear Cindy,

this is beyond anything I have ever encountered while researching this cancer.  Have you contacted other specialists in order to confirm the diagnoses? 

Marions

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: 3 year old with cholangiocarcinoma

I agree with Marion.    I have never heard of anything like this with someone so young.
I'm so sorry. 
A second opinion from someone knowledgable about Cholangio would be an essential next step.
Has your daughter been in Vietnam or parts of the east where the one known parasite to cause this disease lives? 
Have courage and know that there are good resources, and people, here to try to help.
-Peter

4 (edited by JeffG Wed, 29 Aug 2007 16:24:06)

Re: 3 year old with cholangiocarcinoma

Dear Cindy,  Just a few thoughts..... Do you live in an area where spraying of pesticides has been done, or near any big chemical manufactoring plant, been surrounded by second hand smoking, Do you have a basement that may need to be tested for radon gases, do you have city or private well and had it checked for harmful  mineral concentrates ?  Just thinking of something that could be closely related and focused in on for treatment.  I just have not heard of a precious 3 year old with CC before.  I hope they based their DX on a biopsy and not just scans.  One last thing is did she have any medical problems at birth or shortly after and recieved any particular medicines for treatments or any food group or drink that has always been her favorite ?   I'm sorry Cindy  for rambling, just questions and things I would be thinking of if it was I and hopefully the doctors.  Cindy , I am praying  hard for a false or misdiagnoses of your little girl.  There has got to be a positive out come!  Pray, get second opinion, advocate, ask alot of questions.  Again I apologize for being so direct and out spoken, but this CC has been a personal battle of mine for a long time and when I heard this, it about tore my heart out.  You tell the doctors you have prayed to God to give them the miracle wisdom and knowledge to help your little one.
God Bless and Prayers of support headed your way!!!  Faith and Hope go hand in hand.
Jeff G.
P.S.  Cindy I mentioned all the above as through my research back through my life I have been exposed to all plus more during my military career.

Take it to the Limit,One More Time! (Eagles)

Re: 3 year old with cholangiocarcinoma

Cindy -this is so shocking to those of us who are living through CC with our loved ones. Please get the best GI oncologist to diagnose this, or come to the National Cancer Institute to get some help. This is so shocking in someone so young. My proyers will be with you and your little one...

6 (edited by JeffG Fri, 31 Aug 2007 20:40:13)

Re: 3 year old with cholangiocarcinoma

Cindy....Ask about inherited diseaes Primarily excessive" copper build up" in the liver and other organs. There is an actual name for this but I cant remember.
Jeff G.  P.S.  Wilsons disease or Copper toxcity Buildup

Take it to the Limit,One More Time! (Eagles)

Re: 3 year old with cholangiocarcinoma

Cindy, my god i am truly devestated by your story.  i agree with the others.  get a second and or third opinion.
my thoughts and prayers are with you
lynda

Re: 3 year old with cholangiocarcinoma

Cindy - I am so saddened to hear of this.  I echo the thoughts of others - bring your daughter to multiple specialists to get second/third/fourth opinions.  You mention that your daughter was diagnosed in LA - is that Los Angeles, or Louisiana?  If you are in Louisiana, I highly recommend coming to MD Anderson in Houston and seeing Dr. Melanie Thomas. 

My thoughts and prayers are with you.

30-something caregiver

Re: 3 year old with cholangiocarcinoma

Dear Cincy,
   Life everyone else, I am shocked! There is a Mayo clinic in Arizona that is supposed to be very knowledgeble in this cancer. I would definitely get a second and third opinion. This is your baby, GO ANYWHERE if you can. There are a group of Dr.s at John Hopkins that specialized in this also. You might want to email them. I know they will respond, they did with me when I inquired about my husband.
Please know that you are in my family's thoughts and prayers.
Please, please, keep us informed. That poor little baby. I wish I understood all of this.
Sandy

Re: 3 year old with cholangiocarcinoma

Just wanted to post an update on the three year old.  I know we were all alarmed at the post.  I did speak with her mother on the phone immediately after she originally posted and gave her some information from one of the top cholangiocarcinoma researchers in the world.  He gave me a list of questions and several other things that her Dr's needed to consider before they diagnosed her with cholangiocarcinoma.

I'm received and update to her care page  today and  you will be happy to know she does not have cholangiocarcinoma and it is not cancer, she does have a disease that may require a liver transplant.

Stacie

Re: 3 year old with cholangiocarcinoma

Stacie,
Thanks for the update.  It's true that we were all shocked.
Certainly I was. 
It's odd to think of a liver transplant as good news but they are done so successfully now, as long as a donor is found,
-Peter

Re: 3 year old with cholangiocarcinoma

So happy to hear it's not CC.  Hope a liver donor will help her as soon as possible. 
Jeff G.

Take it to the Limit,One More Time! (Eagles)