Daughter w/islet cell in Liver

My young daughter has has her complete pancreas removed due to islet cell tumors just recently.  They have also found a couple small spots on her liver and are working to determine the best way forward from a treatment stand point.  We are very distressed as a family being that our daughter is not even out of highschool yet and this surprising turn of events has us all reeling to try to understand whats going on etc.

 I have read various things... whether to treat or treat agressively or just let it be, whether to remove part of the liver and so on.  Anyone who can offer any insight into this or knows of anyone that has heard of similiar in a person this young... would be appreciated.

Thanks.

I have a 20 yr old daughterwith Fibrolameller Hepatocelluler Carcinoma

primery liver with mets to the lungs..........I feel your pain as a parent..This form of cancer effects young kids 15-25 most of the time....read up on it and see if this could be your case.. Fight with all you have and don't settle for just the routine treatment. Search several Doctors in different states..

Hope this helps in some way

Kellie

On 7/9/2008 kelliejo2 wrote:

I have a 20 yr old daughterwith Fibrolameller Hepatocelluler Carcinoma

primery liver with mets to the lungs..........I feel your pain as a parent..This form of cancer effects young kids 15-25 most of the time....read up on it and see if this could be your case.. Fight with all you have and don't settle for just the routine treatment. Search several Doctors in different states..

Hope this helps in some way

 

Kellie

KELLIE!!!!  I cannot believe I found someone dealing with what I am going through, considering how rare it is!  My son who just turned 14 was diagnosed last month with fibrolamellar hepatocellular carcinoma. He has mets to the lungs, pancreas and pelvis. Quinton was given 3-6 months to live. If the newer chemo pill he was given (sorafenib) works for him to slow progression, docs at Children's hospital in Cincinnati, OH (3rd in nation!) said it adds three months to life, at best. It is like walking through a nightmare that won't end, Kellie, as you know. Quinton has been healthy all his life and just got an "A" in gym at the end of the school year for running the MILE. We lost Quinton's dad to a rare autoimmune disease two years ago.                                               

Could you tell me, please, what your daughter's symptoms are right now? My heart hurts for you both!

--Quinton's mom, Connie