Fibrolamellar Liver Cancer

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  • AllieMatt
    AllieMatt Member Posts: 16
    #42
    AllieMatt said:

    I have heard the same things as you about the cancer being non-metastestizing and to be found in younger women and it does not respond to chemo or radiation and surgery is the only option. Surgery worked for me and sounds like it did for you as well. My pain is much better now since it has been over a year. It still aches sometimes, but not as bad as it was before! I wish you continued good health!

    Just wanted to let you all know that I had another clear scan on Wednesday. It has been 21 months since my surgery to remove 1/2 of my liver due to Fibrolamellar Carcinoma. My oncologist is very optimistic that I will remain clear although he does want another CT scan done in 6 months (March 2006). After that I will go yearly until we are both comfortable with me stopping.
    Hope everyone is doing well.
  • akauf
    akauf Member Posts: 8
    #43
    AllieMatt said:

    Just wanted to let you all know that I had another clear scan on Wednesday. It has been 21 months since my surgery to remove 1/2 of my liver due to Fibrolamellar Carcinoma. My oncologist is very optimistic that I will remain clear although he does want another CT scan done in 6 months (March 2006). After that I will go yearly until we are both comfortable with me stopping.
    Hope everyone is doing well.

    Hi-

    So happy to hear your good news! That is great! How are your kids and family doing? I'm doing ok. I had a scan in August and everything looked ok which I was sooo relieved about because the scan I had just 3 months before was suspicious. It has now been 3 years since my last re-occurrence. So happy! I go now every 4 months for the CT scan. Good to hear from you.
  • waterbug
    waterbug Member Posts: 21
    #44
    AllieMatt said:

    hollers - congrats to you on having a good pregnancy and for the 3rd boy! I would love to have 3 boys - not that I would trade my girl for anything, but if I were to pick one sex it would be all boys. Think of how much fun they will have growing up together! I think we are done having kids, but part of me will always want 3! Good luck and keep me posted!
    Julie

    It's been awhile since I posted. I was diagnosed with breast cancer in March. I just completed all of my treatments. Our daughter's scan showed a recurrence of the fibrolamellar in May: 3 tumors in her abdomen and 2 tiny ones in her left lung. She has been in a clinical trial since July and maintaining. The last 2 scans showed no shrinkage but no growth. We are keeping faith, love and laughter as mother-daughter cancer patients. The hero is really my husband/her dad! I am excited to hear about all of the great news ...good scans and babies. Happy Holidays to all and a great 2006!! :)
  • Unknown
    Unknown
    #45
    This comment has been removed by the Moderator
  • advocatemomma
    advocatemomma Member Posts: 2
    #46
    Hi Julie
    I am Dawn Edwards from California. My son was diagnosed in 2001 with the same Cancer. He underwent a liver resection and then metesticias to his lungs.He has a tumor in his right lung and now the peritoneal cavity and another found in his pelvis As a mom, I am sure your are overwhelmed with many feelings regarding your daughter, I know I am for my son.

    Julie, if you ever feel the need to talk with someone who knows what your going through, please let me know. I will be happy to give you my phone number.
  • aykt36
    aykt36 Member Posts: 28
    #47
    akauf said:

    I was diagnosed with Fibrolamellar Carcinoma when I was 25 back in 1997. I had the tumor resected in 1997 and then had a metastasis to the lung in 2000 and I had that tumor removed and then a positive lymph node removed in 2002. I am hoping that this is the end of the roller coaster. How is your daughter doing? My doctors have been following the same course of treatment...waiting for the tumor ot appear and then removing it. What doctors has she been seeing?

    thanks
    1997 and then had a metastasis to the lung in 2000 and I had that tumor removed and then a positive lymph node removed in 2002. I am hoping that this is the end of the roller coaster. How is your daughter doing? My doctors have been following the same course of treatment...waiting for the tumor ot appear and then removing it. What doctors has she been seeing?thanks










  • AnnaA
    AnnaA Member Posts: 6
    #48
    Fibrolamellar Searching......

    Hi,

    I live in New South Wales, Australia. My brother has recently undergone his fourth operation for Fibrolabellar. His first was in 2007. The last three have been in the last 14 months. After his most recent surgery the doctor has said they can't do anymore surgery :(

    I am now on a search to find other patients (particularly in Australia but not restricted to), doctors, families, anyone with a connection to this cancer to share stories, treatments, information and anything we can to help each other. I have started a blog on blogspot under the name Fibrolamellar Australia with my first blog attempt called 'The Beginning' outlining my brothers story with this cancer. I have also started a Facebook page called Fibrolamellar Australia and a group under the same name, all in the hope of connecting people and information. At the moment, we don't know of any other current Fibrolamellar patients in Australia apart from my brother.

    Please have a look, like and share if you would and please help me connect people together. There is such a small amount of information out there and it isn't well connected. Perhaps this way we can join the dots and get our loved ones some help that works. 

     

    Thank you

  • DeborahinTexas
    DeborahinTexas Member Posts: 1
    #49
    AnnaA said:

    Fibrolamellar Searching......

    Hi,

    I live in New South Wales, Australia. My brother has recently undergone his fourth operation for Fibrolabellar. His first was in 2007. The last three have been in the last 14 months. After his most recent surgery the doctor has said they can't do anymore surgery :(

    I am now on a search to find other patients (particularly in Australia but not restricted to), doctors, families, anyone with a connection to this cancer to share stories, treatments, information and anything we can to help each other. I have started a blog on blogspot under the name Fibrolamellar Australia with my first blog attempt called 'The Beginning' outlining my brothers story with this cancer. I have also started a Facebook page called Fibrolamellar Australia and a group under the same name, all in the hope of connecting people and information. At the moment, we don't know of any other current Fibrolamellar patients in Australia apart from my brother.

    Please have a look, like and share if you would and please help me connect people together. There is such a small amount of information out there and it isn't well connected. Perhaps this way we can join the dots and get our loved ones some help that works. 

     

    Thank you

    Foundation

    Hi Anna,

    My 32 year old son was just diagnosed with Fibrolamellar last Thursday and we are still reeling with shock and grief. I discovered online a foundation in Vermont America called FCF.org. It was really good to find others conected by this terrible disease and some stories were truly inspirational. According to FCF, it's quite rare with only 200 cases wordwide diagnosed every year. Again, according to FCF, there are 2 types of Fibrolamellar, 1 being very aggressive. 5 year survival rate if tumor resectable is >76%.

    Memorial Sloan Kettering Cancer Center has specific reference to fibrolamellar liver cancer on their website. This information addresses many frequently asked questions, is very comprehensive and includes sections on symptoms, diagnosis, risk factors, and treatment options:

    http://www.mskcc.org/cancer-care/adult/liver/fibrolamellar-hepatocellular-carcinoma-fll-hcc 

    I think research is very important and am planning to contact hospital pathology Monday to see if any tumor specimen is available to send to Rockerfellar University Cancer Research in New York. This is some information from their website:http://fibrolamellar.rockefeller.edu

    The first samples of donated tissue are now being used to characterize the genomics of the disease.  Already, we are seeing that the DNA, RNA, and proteins of these samples, are, in fact, altered in fibrolamellar cells as compared to normal, adjacent cells.  We are also seeing that each fibrolamellar sample has different mutations.  We still need many more samples to discover the important “driver” mutations of this disease.

    The Fibrolamellar Cancer Foundation (www.FibroFoundation.org) has been actively supporting clinical and basic research in fibrolamellar since 2008.  They are sponsoring patient activities, funding the first clinical trial for fibrolamellar, and organizing a summit of clinicians who treat fibrolamellar.

    A group recently formed by patients and families called the “Fibrolamellar Registry” (www.fibroregistry.org) is organizing a patient registry—a database where patients can store all of their medical records.  Patients will be able to use this registry to easily transfer their records from one place to another. De-identified patient data will allow for population-level research.  The Fibrolamellar Tissue Repository at Rockefeller is collaborating with this group to facilitate linking patients’ records with their tumor samples.

    We all have to work together, thank you for your efforts!

     

    Deborah

     

     

  • SMSimon
    SMSimon Member Posts: 1
    edited October 2018 #50
    Sources of Information on Fibrolamellar Hepatocellular Carcinoma

    For patients, caregivers and clinicians who are interested in knowing more about Fibrolamellar, a group of patients and caregivers have formed The Fibrolamellar Registry (http://www.fibroregistry.org).  This site includes:

    - Information about fibrolamellar (various frequently asked questions)

    -Plain language summaries of research articles on fibrolamellar

    - A medical registry that has compiled information from over 140 patients (as of Oct 2018) which has attracted research groups which are exploring the data.

     

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