fibrolamellar hepatocellular carcinoma

kelcamky
kelcamky Member Posts: 3
edited December 2022 in Liver Cancer #1
I saw some talk about this from 2003 but nothing recently. Is there anyone dealing with this now ,especially someone young? My stepson has been diagnosed with this since Dec. 2003 (it came on very quickly) and this December has been given approximately six months. He is 21. He was told chemo would give him another couple of months and he said no since he doesnt want to be sick with only being given such a little time. He was turned down by the Cancer Centre in New York City but does have a meeting with Roswell Park in Buffalo. He had the tumour removed in Jan. 2004 and 2/3 of his stomach as the tumour grew into the stomach and some lymph nodes removed. There was a suspicious spot on the lungs at that time but the doctors werent concerned about it. Now the cancer has metasisized (sorry about the spelling). I am hoping for help in dealing with this news and also information for him.
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Comments

  • labrock
    labrock Member Posts: 3
    #2
    I was 33 years old when I was diagnosed. I am a female and I've been through 2 operations and 6 weeks of chemo & radiation. I would like to hear from you for an update on your stepson.
  • AllieMatt
    AllieMatt Member Posts: 16
    #3
    I was diagnosed with Fibrolamellar Hepatocellular Carcinoma last year and had 1/2 of my liver removed. I am 32 years old. I am confused by this post since what I have been told about this is that it does not respond to chemo and it is a very slow growing, curable cancer. I have done a lot of research on this as I was shocked when I got the diagnosis. Now I am confused. Are there different types of Fibrolamellar cancer? There is a thread on this site with others who have the same diagnosis as I do. If you type in "Fibrolamellar" under the search it brings it up.
    I hope your stepson is comfortable and is doing well, or as best as he can be doing.
    I just wanted to pass on the info I had.
  • ehr41
    ehr41 Member Posts: 3
    #4
    I feel terribly about your stepson. Like alliematt, I am under the impression that fibrolamellar liver cancer is slow-growing, so it's terrible to hear about his experience. Did it metastesize to his lungs? I had surgery for this cancer about 8 weeks ago and have some "nodules" on my lungs, but the oncologist and radiologists do not think they'e tumors, although they're watching them closely.
    One treatment you might want to research is radiofrequency ablation. From what I've read, it can be quite effective in shrinking and/or destroying tumors, including ones on the lungs. Does that seem to be an option for your stepson?
  • mjpnlf
    mjpnlf Member Posts: 2
    #5
    labrock said:

    I was 33 years old when I was diagnosed. I am a female and I've been through 2 operations and 6 weeks of chemo & radiation. I would like to hear from you for an update on your stepson.

    I am interested in your treatments and how you have been doing. I discovered my tumor less than a year ago, (apr 05') and I had a surgery to remove in July 05'. I showed small tumors on my first 3 month checkup and was scheduled for RFA which was called off after discovering more tumors in my liver and in my lungs. I am headed for my first chemo treatment on Monday the 13th of Feb 06' and I am freaking out. What drugs did they use for you? I am going to be taking a combo of Avastin, Oxaliplatin & Gemcitabine. I go to the Cancer Center at Mass General Hospital and my oncologist is the head of Ocology there and works for Dana Farber as well. He actually did a trial w/these combinations of drugs and had some good success...I am looking for anything because I really want to get through this...I just turned 30 in December and I cannot imagine missing out on my 4 year olds life. If you have anything, let me know. Thanks.
  • akauf
    akauf Member Posts: 8
    #6
    mjpnlf said:

    I am interested in your treatments and how you have been doing. I discovered my tumor less than a year ago, (apr 05') and I had a surgery to remove in July 05'. I showed small tumors on my first 3 month checkup and was scheduled for RFA which was called off after discovering more tumors in my liver and in my lungs. I am headed for my first chemo treatment on Monday the 13th of Feb 06' and I am freaking out. What drugs did they use for you? I am going to be taking a combo of Avastin, Oxaliplatin & Gemcitabine. I go to the Cancer Center at Mass General Hospital and my oncologist is the head of Ocology there and works for Dana Farber as well. He actually did a trial w/these combinations of drugs and had some good success...I am looking for anything because I really want to get through this...I just turned 30 in December and I cannot imagine missing out on my 4 year olds life. If you have anything, let me know. Thanks.

    Hello-
    I am so sorry to hear what you are going through. I was diagnosed with fibrolamellar in 1997 and have had 2 re-occurrences since then. I am doing good now. A really good resource and website that was was recently created for fibrolamellar is www.deliveracure.org. There is a message board and resource page that you will find very helpful. How did you get diagnosed? How did the treatment go on Monday? It sounds like you are in good hands. Please keep me posted.
    -Amy
  • ebonysue
    ebonysue Member Posts: 2
    #7
    ehr41 said:

    I feel terribly about your stepson. Like alliematt, I am under the impression that fibrolamellar liver cancer is slow-growing, so it's terrible to hear about his experience. Did it metastesize to his lungs? I had surgery for this cancer about 8 weeks ago and have some "nodules" on my lungs, but the oncologist and radiologists do not think they'e tumors, although they're watching them closely.
    One treatment you might want to research is radiofrequency ablation. From what I've read, it can be quite effective in shrinking and/or destroying tumors, including ones on the lungs. Does that seem to be an option for your stepson?

    hi, could you please tell me which website you found radiofrequency ablation on? i have just had a scare with fibrolamellar possibly being in my lungs and would like to be forearmed just in case the news is not so good next time. at least this is something i could mention to my consultants.
  • hollers
    hollers Member Posts: 7
    #8
    akauf said:

    Hello-
    I am so sorry to hear what you are going through. I was diagnosed with fibrolamellar in 1997 and have had 2 re-occurrences since then. I am doing good now. A really good resource and website that was was recently created for fibrolamellar is www.deliveracure.org. There is a message board and resource page that you will find very helpful. How did you get diagnosed? How did the treatment go on Monday? It sounds like you are in good hands. Please keep me posted.
    -Amy

    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
  • sgrmoranda
    sgrmoranda Member Posts: 7
    #9
    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
  • sgrmoranda
    sgrmoranda Member Posts: 7
    #10
    ebonysue said:

    hi, could you please tell me which website you found radiofrequency ablation on? i have just had a scare with fibrolamellar possibly being in my lungs and would like to be forearmed just in case the news is not so good next time. at least this is something i could mention to my consultants.

    radio frequency ablation
    Hi,

    I realize that you posted this note a couple of years ago. Hope you found the answers you were looking for.

    Would love to hear from you. My daughter was diagnosed nearly 4 years ago. She's been through a lot and we would love to hear of someone else who knows about what it's like to go through this disease.

    Please write back if you are able.

    Thanks.

    Sue
  • sgrmoranda
    sgrmoranda Member Posts: 7
    #11
    ehr41 said:

    I feel terribly about your stepson. Like alliematt, I am under the impression that fibrolamellar liver cancer is slow-growing, so it's terrible to hear about his experience. Did it metastesize to his lungs? I had surgery for this cancer about 8 weeks ago and have some "nodules" on my lungs, but the oncologist and radiologists do not think they'e tumors, although they're watching them closely.
    One treatment you might want to research is radiofrequency ablation. From what I've read, it can be quite effective in shrinking and/or destroying tumors, including ones on the lungs. Does that seem to be an option for your stepson?

    fibrolamellar hepatocellular carcinoma
    Hi,

    Your note was written the same month my daughter was diagnosed. How are things going?

    We'd love to hear from you.

    Thanks.

    Sue
  • sgrmoranda
    sgrmoranda Member Posts: 7
    #12
    AllieMatt said:

    I was diagnosed with Fibrolamellar Hepatocellular Carcinoma last year and had 1/2 of my liver removed. I am 32 years old. I am confused by this post since what I have been told about this is that it does not respond to chemo and it is a very slow growing, curable cancer. I have done a lot of research on this as I was shocked when I got the diagnosis. Now I am confused. Are there different types of Fibrolamellar cancer? There is a thread on this site with others who have the same diagnosis as I do. If you type in "Fibrolamellar" under the search it brings it up.
    I hope your stepson is comfortable and is doing well, or as best as he can be doing.
    I just wanted to pass on the info I had.

    fibrolamellar hepatocellular carcinoma
    Hi,
    My daughter was diagnosed in March 2005 with this disease. How are you doing? We'd love to hear from you.
    Sue
  • sgrmoranda
    sgrmoranda Member Posts: 7
    #13
    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

    fibrolamellar hepatocellar carcinoma
    Hi,
    My daughter was diagnosed with this disease in March 2005. How are you doing? We'd love to hear from you.
    Sue
  • ej65
    ej65 Member Posts: 2
    #14
    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

    Fibrolamellar Hepatocellular Carcinoma
    Hello all
    My 22 year old son was diganosed on Dec 10,2008 and we are undergoing care at Stanford University. Shane's liver is 90% infected with tumor and has nodes in both lungs and lyphnodes, yes we caught it very late. He was scheduled to receive the drug Nexavar but this was delayed due to Shane's ability to handle the drug. Shane has had a total of 42 liters of fluid removed from his abdomen since Dec 10. On January 27th Shane underwent procedure to put stents into his arteries due to blockage. On 30th we started the first step in receiving Theraspheres, which he should be receiving around the 9th or 10th of February. They are hoping to extend his life with this procedure. Every post I have read on here is hopeful but at the same time it seems all were caught early on. I keep searching the internet for help and insight but every turn leads me to even more questions. Not sure what I am looking for or just being able to vent to others that are going through what I am going through.
  • Tammya
    Tammya Member Posts: 8
    #15
    ej65 said:

    Fibrolamellar Hepatocellular Carcinoma
    Hello all
    My 22 year old son was diganosed on Dec 10,2008 and we are undergoing care at Stanford University. Shane's liver is 90% infected with tumor and has nodes in both lungs and lyphnodes, yes we caught it very late. He was scheduled to receive the drug Nexavar but this was delayed due to Shane's ability to handle the drug. Shane has had a total of 42 liters of fluid removed from his abdomen since Dec 10. On January 27th Shane underwent procedure to put stents into his arteries due to blockage. On 30th we started the first step in receiving Theraspheres, which he should be receiving around the 9th or 10th of February. They are hoping to extend his life with this procedure. Every post I have read on here is hopeful but at the same time it seems all were caught early on. I keep searching the internet for help and insight but every turn leads me to even more questions. Not sure what I am looking for or just being able to vent to others that are going through what I am going through.

    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
  • t.pothast
    t.pothast Member Posts: 3
    #16
    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

    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.
  • Thomasbourg
    Thomasbourg Member Posts: 22
    #17
    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

    my daughter-K
    My daughter was diagnosed with this terrible disease on 10-13-03, She was 19 at the time. She had 60 percent of her liver removed . Then 18 months later she had a spot behind her right lung removed at MD Anderson in Houston Tx. Since then she had her 4th surgery 6 weeks ago and is facing a 5th surgery this Wednesday there on her left side in her lung. She had cemo for 6 weeks and interferon shots also 3 years ago, didn't do anything. She was told today she had 2 more spots on her right side that she just had surgery on that are there. HAve you had any new medicines that have worked? Mother Martha
  • Thomasbourg
    Thomasbourg Member Posts: 22
    #18
    sgrmoranda said:

    fibrolamellar hepatocellular carcinoma
    Hi,
    My daughter was diagnosed in March 2005 with this disease. How are you doing? We'd love to hear from you.
    Sue

    Sue
    Sue, My daughter also was diagnosed with fibrolamellar in 10-2003. She is going to MD Anderson in Houston and has had 60 percent of her liver removed in 03, since then she has had 3 more surgeries and will have her 5 tomorrow. They are now talking about doing other treatments. Did your daughter have any cemo or radiation? Please let me know. Thanks, Martha
  • Thomasbourg
    Thomasbourg Member Posts: 22
    #19
    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

    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
  • Thomasbourg
    Thomasbourg Member Posts: 22
    #20
    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.

    Please contact me and I will
    Please contact me and I will respond
  • Thomasbourg
    Thomasbourg Member Posts: 22
    #21
    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

    My daughter has the same
    My daughter has the same thing. I am trying to get someone to respond to me and I haven't had any luck. Can you contact me and let me know how you are doing? We live in Lake Charles, LA . She goes to MD Anderson in Houston, Tx Mother Martha

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