Fibrolamellar Liver Cancer

jevans
jevans Member Posts: 2
edited March 2014 in Rare and Other Cancers #1
My daughter was diagnosed with fibrolamellar hepatocellular carcinoma in August, 2000, when she was 19 years old. She had a liver transplant in October, 2000, and did fine until a metastacies of this same cancer was found on her lung in Sept of 2001. She had a lobectomy in Feb of 2002. She had a grapefruit sized tumor removed from her pelvis in Feb of 2003. I am looking for others who have experience with this kind of liver cancer. It is rare and we have not been very successful in finding doctors who know about this cancer, let alone how to treat it. The basic treatment has been to wait for a tumor to occur, then surgically remove it. We would like to be more proactive and any information to help us do this would be so greatly appreciated.

Thank you,

Julie Evans

Comments

  • waterbug
    waterbug Member Posts: 21
    #2
    Where do you live? My daughter age 22 was just diagnosed with fibrolamellar cancer in January 2003. she had 45% of her liver removed
  • waterbug
    waterbug Member Posts: 21
    #3
    We are going back for surgery
  • Thomasbourg
    Thomasbourg Member Posts: 22
    #4
    waterbug said:

    We are going back for surgery

    Martha
    This is 2009 anyone out there?
  • Thomasbourg
    Thomasbourg Member Posts: 22
    #5
    julie
    This is July, 2009 my daughter has had this cancer since 2003, I am looking for anyone to respond to this email that can relate to us. Please respone Mom Martha
  • pothast4
    pothast4 Member Posts: 1
    #6
    Thomasbourg said:

    julie
    This is July, 2009 my daughter has had this cancer since 2003, I am looking for anyone to respond to this email that can relate to us. Please respone Mom Martha

    My son is 10 and he ws DX
    My son is 10 and he ws DX with this cancer in December 08. How is your daugter?
  • Thomasbourg
    Thomasbourg Member Posts: 22
    #7
    my daughter has
    my daughter has fibrolemellar cancer , is anyone on line that has a child with this. Mother, Martha
  • Thomasbourg
    Thomasbourg Member Posts: 22
    #8
    pothast4 said:

    My son is 10 and he ws DX
    My son is 10 and he ws DX with this cancer in December 08. How is your daugter?

    Mother Martha
    She is starting cemo in about 2 weeks, She has had 4 major surgeries and the last one, they couldn't get it all. They feel surgery may not be the thing now. Cemo is experimental I think. Where do you live and what hospital is your son. Does he have Fibrolemellar? We live in Lake Charles, LA, and she goes to MD Anderson in Houston, Tx.Please get back to me , you are the first to respond back to me. I hope your son is well. Please let me know his details. Martha
  • Thomasbourg
    Thomasbourg Member Posts: 22
    #9
    pothast4 said:

    My son is 10 and he ws DX
    My son is 10 and he ws DX with this cancer in December 08. How is your daugter?

    please write back
    To look at my daughter you could never tell she has this awful thing. She is 25 now and has been married for almost 3 years to a wonderful man. When the doctor told her after she started this cemo she would not be able to get pregnant. They are in the process in in vitro. They already took 3 of her eggs and they were fertilized by her husband and this Friday they are going to implant 2 of the embryos into her friend that is a surrograte for them. We are so excited. Her friend has been a great friend since they were 3 and she has been married for 6 years and has 2 children and has her tubes tied. They will try this in 2 days. then next week she will start the cemo. We will know if it took in 2 weeks. Please get back to me. You will be the first one to respond. Good luck Martha
  • theo_193
    theo_193 Member Posts: 1
    #10
    Thomasbourg said:

    my daughter has
    my daughter has fibrolemellar cancer , is anyone on line that has a child with this. Mother, Martha

    How is your daughter
    How is your daughter now?What does she exactly have,i mean where in the liver and how big?what have you so far done?I ve been through it,so i now know many things..If you want to ask something..
  • Unknown
    Unknown
    #11
    This comment has been removed by the Moderator
  • DesperateDad
    DesperateDad Member Posts: 1
    #12
    Thomasbourg said:

    my daughter has
    my daughter has fibrolemellar cancer , is anyone on line that has a child with this. Mother, Martha

    Fibrolamellar
    A long time has elapsed since your last post. How are things going? My 19-year-old son was diagnosed in August 2011 and had 60% of his liver removed. On the 5th April, he was told it had spread to his lungs and abdomen and it seems it's inoperable. I am desperate to link up with others who have experience of this disease and how to cope with it.
  • cindyu
    cindyu Member Posts: 2
    #13
    Thomasbourg said:

    my daughter has
    my daughter has fibrolemellar cancer , is anyone on line that has a child with this. Mother, Martha

    Fibrolamellar Liver Cancer/ FHC
    I have a 22 year old daughter w/ this cancer. She was first diagnosed w/ Stage 1 @ the age of 13 in 2003 and was treated at Oklahoma Children's Hospital @ The Jimmy Everest Cancer Clinic in OKC, OK.

    It recurred in 2010 as Stage 4, with tumors metastasized to her lung, reproductive organs, rectum and colon.
    She had a miracle surgeon @ Oklahoma UniversityMedical Center, in OKC-- Dr. Postier and her oncologist was Dr. Kurkjian.
    She had a radical hysterectomy and colon resection, and Lung resection, which saved her life.

    It has now shown up again in September 2012, again in her abdomen. We are going to MD Anderson in Houston, TX to consult w/ Dr. Ahmed Kaseb.
    He is a Liver Cancer Specialist--he only sees liver cancer patients and has done clinical trials on FHC.

    God bless you all and your loved ones.
  • cindyu
    cindyu Member Posts: 2
    #14
    DesperateDad said:

    Fibrolamellar
    A long time has elapsed since your last post. How are things going? My 19-year-old son was diagnosed in August 2011 and had 60% of his liver removed. On the 5th April, he was told it had spread to his lungs and abdomen and it seems it's inoperable. I am desperate to link up with others who have experience of this disease and how to cope with it.

    HFC
    I posted some details of my daughter's experience w/ this cancer. I wish your son and family the best.
    We've been in the fight for 9 years.

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