fibrolamellar hepatocellular carcinoma

24

Comments

  • Thomasbourg
    Thomasbourg Member Posts: 22
    #22
    sgrmoranda said:

    fibrolamellar hepatocellular carcinoma
    Hi,

    My daughter was diagnosed in March of 2005 with this nasty disease. She has had 4 major surgeries at Johns Hopkins Hosptial in Baltimore, MD. She is now undergoing chemo embolization - she had the procedure done on Friday 12.22.08.

    I would love to hear from you. Hope all is well.

    With heartfelt gratitude.

    Sue

    Please contact me about your
    Please contact me about your daughter, would love to hear about her condition. My daughter as well has this too. Please let me hear from you. Martha
  • Thomasbourg
    Thomasbourg Member Posts: 22
    #23
    t.pothast said:

    HCC
    Our 9 year old son was diagnosed with HCC right after Christmas 2008. His had a liver resection and undergone 3 rounds of chemo with a nice little cocktail of 4 drugs (cisplatin, doxorubicin, 5FU and interferon).

    We are looking to switch to Nexavar. Has anyone had any luck with the tumor shrinking for a long period? I'm hesitant to use the term permanently because Nexavar has not been on the market long and long term results are still to be seen.

    My daughter is starting cemo
    My daughter is starting cemo in 1 week. She has fibrolemellar. Please get back to me . We live in LA and go to MD Anderson in Houston, tx Martha
  • Thomasbourg
    Thomasbourg Member Posts: 22
    #24
    Thomasbourg said:

    Tammy, Where do you live ?
    Tammy, Where do you live ? Where do you have treatment? You must be around 26 now. My daughter will be 25 in a few weeks. Please write and let me know how you are doing.Martha

    Tammy
    Tammy, My name is Martha and my daughter is about the same age as you are. Please get back with me and let us know how you are doing. I have written to couple of people and no one has gotten back to me. Where do you live we live in LA ,Martha
  • Thomasbourg
    Thomasbourg Member Posts: 22
    #25
    Tammya said:

    Hi there. I am so sorry to
    Hi there. I am so sorry to hear that your son has been diagnosed with this terrible disease.
    I was diagnosed on the 8th September 2003 and am unfortunately still fighting.
    I have been on a number of different chemotherapy's, but not one has worked for me so far (including the Nexavar), I am now on a course of Oxalyplatin and Xeloda, but at this stage am not sure if it's working as I have only been on for about 2 months and have not had a scan since I started.
    I also had the theraspheres treatment late last year, but this also did not work for me, at the time of me having the theraspheres most of my liver was taken up by tumour, but 3 months after the treatment the tumours had grown and I had roughly 20+ tumours which had developed in my lungs.
    I know that you are hopeful that this will work for Shane, but do not give up hope, I believe that each treatment works differently for each person, so maybe it will work for him.

    I was 21 when diagnosed and at that stage the tumours were all resected, but have since come back over and over again and are now unresectable.

    Do not give up hope.

    If you wish to chat some more or have any questions, feel free to send me a private message.

    Regards
    Tammy

    Still checking on you.
    Still checking on you. Please write back. What meds are you on now, and where do you live and go to the hospital? We go to MD Anderson in Houston , Tx. My daughter will start cemo next week, not sure what kind yet. Please write would love to hear from someone.
  • Thomasbourg
    Thomasbourg Member Posts: 22
    #26
    hollers said:

    Amy,
    How are you doing now?
    Amy,

    How are you doing now? You're the person who's doing the best that's had this the longest. I'm going on 5 years and am doing really well. No reoccurences.

    Holly

    Mom Martha
    Would love to hear from someone on this site, My daughter has had fibrolemellar for almost 6 years, She has had 4 major surgeries and now it is back and they are going to start cemo in 1 week. Please let me hear from someone on this site, I have never heard back from anyone
  • Tammya
    Tammya Member Posts: 8
    #27
    Thomasbourg said:

    Please contact me about your
    Please contact me about your daughter, would love to hear about her condition. My daughter as well has this too. Please let me hear from you. Martha

    Hi there...I am sorry that I
    Hi there...I am sorry that I have not responded earlier, but I only saw your post now!
    Yes, I am now 27. Since my last post I had 4 sessions of Xeloda and Oxaliplatin, after which scans showed that the tumours had again increased in size. My doctor has now added Avastin to my regime, so Xeloda/Oxaliplatin and Avastin. I have had 4 sessions and have another 2 before scans.

    I would like to hear more about your daughter as well. I can't figure out how to send a private message on here :)

    Please respond and let me know what treatments your daughter is on.

    Tammy
  • Tammya
    Tammya Member Posts: 8
    #28
    Tammya said:

    Hi there...I am sorry that I
    Hi there...I am sorry that I have not responded earlier, but I only saw your post now!
    Yes, I am now 27. Since my last post I had 4 sessions of Xeloda and Oxaliplatin, after which scans showed that the tumours had again increased in size. My doctor has now added Avastin to my regime, so Xeloda/Oxaliplatin and Avastin. I have had 4 sessions and have another 2 before scans.

    I would like to hear more about your daughter as well. I can't figure out how to send a private message on here :)

    Please respond and let me know what treatments your daughter is on.

    Tammy

    Hi again
    I would like to let
    Hi again

    I would like to let you know that I had a scan on Friday 18th September 2009 and am pleased to report that my tumors are shrinking, some by up to 2cm (in just 4 months)
    As in my previous post I am on a combination of Xeloda/Oxaliplatin and Avastin.
    I am also seeing a homepath and getting Iscador injections from her...I am quite confident that these injections have played an important role in the tumor shrinkage.
    my oncologist also mentioned that the tumors have changed in density, which to them is also a positive improvement.

    Tammy
  • Thomasbourg
    Thomasbourg Member Posts: 22
    #29
    Tammya said:

    Hi again
    I would like to let
    Hi again

    I would like to let you know that I had a scan on Friday 18th September 2009 and am pleased to report that my tumors are shrinking, some by up to 2cm (in just 4 months)
    As in my previous post I am on a combination of Xeloda/Oxaliplatin and Avastin.
    I am also seeing a homepath and getting Iscador injections from her...I am quite confident that these injections have played an important role in the tumor shrinkage.
    my oncologist also mentioned that the tumors have changed in density, which to them is also a positive improvement.

    Tammy

    from Martha
    Tammya, I am so glad you wrote to me. I am crying right now because something is finally shrinking the tumbors. My daughter is Kerri we live in Lake Charles, LA and she goes to MD Anderson in HOuston, TX. about 2 1/2 hours from here. She too has had 4 surgeries and will start the same meds that you are on now. SHe was suppose to start tomorrow, but woke up this morning with fever and throwing up , A Lot going on here like that. She went to the dr and he said just a stomach bug( her friend and family had it Friday and she was with them). She is 25 and has been fighting like you for 6 years. She has been married almost 3 years. So encouraged with your news. Did it make your hair fall out? So the scans before didn't show any shrinkage before 4 months? I would love to get your number and let you talk to my daughter. Where do you live? I am soooo excited to hear from you. You are the only person ever to respond at all. Kerri is a dental hygentist. She is a avid runner . She runs 4 to 6 miles about 3 times a week. 3 years ago her dr put her on Xelodo and interferon shots for around of 3 rounds, but only saw more spots so they took her off everything and just started to see her surgeon until now. They told her she would be steoid (misspelled I am sure) after the cemo so she had a best friend that want to be a surragate for them , so they just got through with invitro and she got pregnant but started to spot and found out this past Tuesday that she misscarried. So that was a one time shot,but very sad from that. Now got sick and then next week facing cemo. She and her husband are amazing people, if you have facebook her name is Kerri Hebert, Look her up . Please keep in touch, and I have a facebook too , Martha Bourgeois, Please send a friend request and I will accept and maybe we can just keep in touch through that. Thank you again for getting back to me. Please keep in touch. I am so excited that maybe they have found a cure for this kind of cancer.. Mrs. Martha Bourgeois
  • Thomasbourg
    Thomasbourg Member Posts: 22
    #30
    Tammya said:

    Hi again
    I would like to let
    Hi again

    I would like to let you know that I had a scan on Friday 18th September 2009 and am pleased to report that my tumors are shrinking, some by up to 2cm (in just 4 months)
    As in my previous post I am on a combination of Xeloda/Oxaliplatin and Avastin.
    I am also seeing a homepath and getting Iscador injections from her...I am quite confident that these injections have played an important role in the tumor shrinkage.
    my oncologist also mentioned that the tumors have changed in density, which to them is also a positive improvement.

    Tammy

    from Martha
    Tammya, I am so glad you wrote to me. I am crying right now because something is finally shrinking the tumbors. My daughter is Kerri we live in Lake Charles, LA and she goes to MD Anderson in HOuston, TX. about 2 1/2 hours from here. She too has had 4 surgeries and will start the same meds that you are on now. SHe was suppose to start tomorrow, but woke up this morning with fever and throwing up , A Lot going on here like that. She went to the dr and he said just a stomach bug( her friend and family had it Friday and she was with them). She is 25 and has been fighting like you for 6 years. She has been married almost 3 years. So encouraged with your news. Did it make your hair fall out? So the scans before didn't show any shrinkage before 4 months? I would love to get your number and let you talk to my daughter. Where do you live? I am soooo excited to hear from you. You are the only person ever to respond at all. Kerri is a dental hygentist. She is a avid runner . She runs 4 to 6 miles about 3 times a week. 3 years ago her dr put her on Xelodo and interferon shots for around of 3 rounds, but only saw more spots so they took her off everything and just started to see her surgeon until now. They told her she would be steoid (misspelled I am sure) after the cemo so she had a best friend that want to be a surragate for them , so they just got through with invitro and she got pregnant but started to spot and found out this past Tuesday that she misscarried. So that was a one time shot,but very sad from that. Now got sick and then next week facing cemo. She and her husband are amazing people, if you have facebook her name is Kerri Hebert, Look her up . Please keep in touch, and I have a facebook too , Martha Bourgeois, Please send a friend request and I will accept and maybe we can just keep in touch through that. Thank you again for getting back to me. Please keep in touch. I am so excited that maybe they have found a cure for this kind of cancer.. Mrs. Martha Bourgeois
  • Thomasbourg
    Thomasbourg Member Posts: 22
    #31
    hollers said:

    Amy,
    How are you doing now?
    Amy,

    How are you doing now? You're the person who's doing the best that's had this the longest. I'm going on 5 years and am doing really well. No reoccurences.

    Holly

    Martha
    Holly, My name is Martha and my daughter is 25 and her story is below with tammy conversation. You can read it about her. We are looking to talk to anyone that will be back to us. Please reply if you can. Martha
  • Unknown
    Unknown
    #32
    This comment has been removed by the Moderator
  • scmabery
    scmabery Member Posts: 1
    #33
    Thomasbourg said:

    My daughter is starting cemo
    My daughter is starting cemo in 1 week. She has fibrolemellar. Please get back to me . We live in LA and go to MD Anderson in Houston, tx Martha

    treatment that your daughter receives
    My son was diagnosed with FHC im March 09. He had a liver resection in May. His three month MRI and PET scan showed a reoccurrance in one lymph node and his lungs. He receives treatment at University of Arkansas Medical Sciences in Little Rock AR. They have contacted MD Anderson and have gotten their recomendation. I was wondering how your daughters treatment was going. We have not been back to see the oncologist since he has gotten these reccomandations. Hopefully we will get in to see him in the next week or two. Thank you for any response.
  • MarttisMom
    MarttisMom Member Posts: 1
    #34
    scmabery said:

    treatment that your daughter receives
    My son was diagnosed with FHC im March 09. He had a liver resection in May. His three month MRI and PET scan showed a reoccurrance in one lymph node and his lungs. He receives treatment at University of Arkansas Medical Sciences in Little Rock AR. They have contacted MD Anderson and have gotten their recomendation. I was wondering how your daughters treatment was going. We have not been back to see the oncologist since he has gotten these reccomandations. Hopefully we will get in to see him in the next week or two. Thank you for any response.

    Children with FHC
    Hi, my daughter who is 15yrs old was diagnosed with FHC on October 10, 2009. She had 60% of her liver removed two weeks ago and one of the three lymph nodes that were removed were positive as well. She is being treated at Arkansas Childrens Hospital in Little Rock Ar, and is going to UAMS to have a PET test done today, and is to begin chemo treatments tomorrow. I would just like to chat with someone who is going or has endoured the same during this difficult time. Thank You.
  • t.pothast
    t.pothast Member Posts: 3
    #35
    MarttisMom said:

    Children with FHC
    Hi, my daughter who is 15yrs old was diagnosed with FHC on October 10, 2009. She had 60% of her liver removed two weeks ago and one of the three lymph nodes that were removed were positive as well. She is being treated at Arkansas Childrens Hospital in Little Rock Ar, and is going to UAMS to have a PET test done today, and is to begin chemo treatments tomorrow. I would just like to chat with someone who is going or has endoured the same during this difficult time. Thank You.

    Children with FHC
    Hello

    I am so sorry to hear about your daughter. My 10 year old son Alex was diagnosed with this horrible disease shortly after Christmas last year. He had 80% of his liver removed and 1 lymph node was positve. He had 3 months of chemo (cisplatin, doxarubicen, 5 FU and interferon). He struggled with his platelets so we then switched to Nexavar which he is still currently taking.

    You can contact us directly by emailig us at t.pothast@yahoo.com. My son's caring bridge site is www.caringbridge.org/visit/alexpothast.

    Beth
  • alyssacho
    alyssacho Member Posts: 1
    #36
    Tammya said:

    Hi again
    I would like to let
    Hi again

    I would like to let you know that I had a scan on Friday 18th September 2009 and am pleased to report that my tumors are shrinking, some by up to 2cm (in just 4 months)
    As in my previous post I am on a combination of Xeloda/Oxaliplatin and Avastin.
    I am also seeing a homepath and getting Iscador injections from her...I am quite confident that these injections have played an important role in the tumor shrinkage.
    my oncologist also mentioned that the tumors have changed in density, which to them is also a positive improvement.

    Tammy

    Tammy, How are you doing now?
    My husband is 29 years old and he has this cancer since Jan. 2008. We live in France right now and he is very tired with everything. He had two surgeries since that time and now he is taking Nexavar. We are going to talk with our doctor about what you are taking and hope to have the same outcome as you. We would like to know how you are going.

    Hope to hear from you soon.
    Alyssa
  • joshhenry08
    joshhenry08 Member Posts: 1
    #37
    Thomasbourg said:

    My daughter is starting cemo
    My daughter is starting cemo in 1 week. She has fibrolemellar. Please get back to me . We live in LA and go to MD Anderson in Houston, tx Martha

    My older brother had
    My older brother had fibrolemellar, he was 22 years old.
    and he was diagnosed around early december of last year.
    The only noticable early symptom we could gather was the weight loss.
    He steadily began losing weight for a couple months and then went off to San Francisco academy of the Arts. He came down for thanksgiving dinner that year and we noticed his abdomen had swelled up. we got him into the doctor, got him treatments.
    It was a hard road to go down. If anyone, patient or patient's families want to talk, I'm here. I've been through it and I want to help in any way possible.
  • lis777
    lis777 Member Posts: 1
    #38
    Tammya said:

    Hi again
    I would like to let
    Hi again

    I would like to let you know that I had a scan on Friday 18th September 2009 and am pleased to report that my tumors are shrinking, some by up to 2cm (in just 4 months)
    As in my previous post I am on a combination of Xeloda/Oxaliplatin and Avastin.
    I am also seeing a homepath and getting Iscador injections from her...I am quite confident that these injections have played an important role in the tumor shrinkage.
    my oncologist also mentioned that the tumors have changed in density, which to them is also a positive improvement.

    Tammy

    Hi Tammy From Australia
    Hi Tammy,

    Hope you are doing well and am very interested to see how Iscador injections have worked for you?

    My name is Lis from Sydney Australia. I am 46 years old and first diagnosed with fibro lamellar hepatoma when I was 29 years old. Have had reocurrences on average every 3 years and have just found another tumor near my kidney. This is round 7 for me. Had chemo only once when I was 29 but obviously it didnt work.

    I read your story from Sept regarding Iscador and am interested what your experince with it has been?

    Regards
    Lis
  • for robert
    for robert Member Posts: 1
    #39
    scmabery said:

    treatment that your daughter receives
    My son was diagnosed with FHC im March 09. He had a liver resection in May. His three month MRI and PET scan showed a reoccurrance in one lymph node and his lungs. He receives treatment at University of Arkansas Medical Sciences in Little Rock AR. They have contacted MD Anderson and have gotten their recomendation. I was wondering how your daughters treatment was going. We have not been back to see the oncologist since he has gotten these reccomandations. Hopefully we will get in to see him in the next week or two. Thank you for any response.

    I have the same fibrolamellar hepatocellular carcinoma
    Let me share my story I was dianoised with this in February 2009 I had a 7cmm on my left liver and had a resection Dr. Wu did this surgery at ACH my followup was with Dr. Govin at UAMS in July I had a CT evrything showed great I had a full Ct in October 2009 and I have 3 more tumors one in my new left liver and 2 in my right liver and 1 on my stomach I was put on Nexavar 800 mg a day since then in less then a month I had a CT PET scan and there are more tumors 1 in my lungs 1 chest 1 left lob liver I have yet received any plan for what they can do for me I am scared I am only 16 years old and been through it does anyone know of any treatments they have had Rober
  • Tammya
    Tammya Member Posts: 8
    #40
    lis777 said:

    Hi Tammy From Australia
    Hi Tammy,

    Hope you are doing well and am very interested to see how Iscador injections have worked for you?

    My name is Lis from Sydney Australia. I am 46 years old and first diagnosed with fibro lamellar hepatoma when I was 29 years old. Have had reocurrences on average every 3 years and have just found another tumor near my kidney. This is round 7 for me. Had chemo only once when I was 29 but obviously it didnt work.

    I read your story from Sept regarding Iscador and am interested what your experince with it has been?

    Regards
    Lis

    Hello Lis and Alyssa
    I am
    Hello Lis and Alyssa

    I am doing so well. Unfortunately I have not had any scans since I last posted on this site, so I cannot give you a report on that.
    I have stopped the chemo for a while as I developed an ulcer, so the doctors are waiting for it to heal before I start the chemo again, I am however still on the Iscador injections and I believe that they are working for me, but I hope to report good news after my next scan.
    You should read up on the Iscador (it is made from the mistletoe plant) and you will see for yourself that they have had very good results with it for treating cancer.
    I have 3 injections per week and there are NO side effects exept for a slight rash around the injection site which lasts about 2 days.

    Chat soon
    Tammy
  • kelcamky
    kelcamky Member Posts: 3
    #41
    My stepson passed away in
    My stepson passed away in Sept 2007 after a courageous 3 yr 9 month battle with this dreadful disease. He was able to stay at home with his mom and stepdad which was his wish. I send all of you who are fighting this battle strength and love and pray that a cure will be found. I will pray that Aaron will look down on all of you with hope for your future.

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