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fibrolamellar hepatocellular carcinoma

kelcamky
Posts: 3
Joined: Jan 2005

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.

labrock
Posts: 3
Joined: Jan 2003

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.

mjpnlf
Posts: 2
Joined: Feb 2006

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
Posts: 8
Joined: Jan 2004

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

hollers
Posts: 7
Joined: Jun 2004

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
Posts: 7
Joined: Dec 2008

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

Thomasbourg
Posts: 22
Joined: May 2009

I don't login very much on this site anymore. But my name is Martha and my daughter was diagnosed 10-13-03. She has had 4 major surgeries and now on chemo at MD Anderson in Houston , Tx. She is almost 26 now and has been married for over 3 years. To look at her you would never know anything is wrong with her. She is very active and she and her husband just finished their first Half Marathon in New Orleans 3 weeks ago. How old is your daughter? Instead of this site you can email me at bourgeoismartha@yahoo.com

mpgerli
Posts: 3
Joined: Apr 2010

Hi
Sorry to contact you, but your message has so much hope foe us. My soon also he is diagnosis with Fibrolamellar carcinoma. He had several surgery , and the DR in France are not putting him under Chemio. Can you please share with us the type of treatment your daughter had?
we thank you for your help, and wishe here a long healthy life.
Michel

Thomasbourg
Posts: 22
Joined: May 2009

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

Thomasbourg
Posts: 22
Joined: May 2009

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

Thomasbourg
Posts: 22
Joined: May 2009

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

AllieMatt
Posts: 16
Joined: Jan 2004

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.

sgrmoranda
Posts: 7
Joined: Dec 2008

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

Thomasbourg
Posts: 22
Joined: May 2009

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

ehr41
Posts: 3
Joined: Mar 2005

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?

ebonysue
Posts: 2
Joined: Jun 2006

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.

sgrmoranda
Posts: 7
Joined: Dec 2008

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
Posts: 7
Joined: Dec 2008

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
Posts: 7
Joined: Dec 2008

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

ej65
Posts: 2
Joined: Feb 2009

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's picture
Tammya
Posts: 8
Joined: Jun 2004

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
Posts: 3
Joined: May 2009

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
Posts: 22
Joined: May 2009

Please contact me and I will respond

Thomasbourg
Posts: 22
Joined: May 2009

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

scmabery
Posts: 1
Joined: Oct 2009

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
Posts: 1
Joined: Oct 2009

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
Posts: 3
Joined: May 2009

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

Thomasbourg
Posts: 22
Joined: May 2009

My name is Martha, My daughter has had this over 6 years. You can ask me anything. Email me at bourgeoismartha@yahoo.com . I don't look up this site very much. Martha

dorina
Posts: 1
Joined: May 2010

Hi. My name is Ina, I am from Bulgaria and my sister (27 yo) is suffering from this horrible disease. Can you please give me some information about Nexavar? How do you feel after taking it, what were its side effects and the most important - did it help you. This is the only treatment that German doctors (she lives in Germany and got sick there) are offering. Her tumor is inoperable because of the metastasis and she has a big wound on her leg caused by deep vein thrombosis, so she cannot do a chemo until it heals. Thank you in advance for your understanding and help.

Thomasbourg
Posts: 22
Joined: May 2009

My name is Martha, My daughter has had this over 6 years. You can ask me anything. Email me at bourgeoismartha@yahoo.com . I don't look up this site very much. Martha

for robert
Posts: 1
Joined: Dec 2009

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

Thomasbourg
Posts: 22
Joined: May 2009

Hello Robert, My daughter was 19 when she was diagnosed and that was 6 1/2 years ago. She has had 4 surgeries and is now on chemo Avastin & Erbitux (drip) After 4 treatments they saw a small shrinkage in her tumors. She is now on it again for 6 treatments and then scans. This disease is awful, but keep busy and active . My daughter and her husband just finished running their first half marathon in New Orleans. Where do you live? We live in LA. You can write back anytime. Martha

joshhenry08
Posts: 1
Joined: Dec 2009

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.

Thomasbourg
Posts: 22
Joined: May 2009

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
Posts: 22
Joined: May 2009

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
Posts: 22
Joined: May 2009

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
Posts: 22
Joined: May 2009

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.

ljhr
Posts: 1
Joined: Feb 2010

Our son has FHC also. Since his diagnosis in May, 2008, I have not shared online. I grew up in Palo Alto and was, in fact, born at Stanford U hospital, so I felt a connection. I am willing to connect privately.

Thomasbourg
Posts: 22
Joined: May 2009

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

Tammya's picture
Tammya
Posts: 8
Joined: Jun 2004

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's picture
Tammya
Posts: 8
Joined: Jun 2004

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
Posts: 22
Joined: May 2009

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
Posts: 22
Joined: May 2009

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

alyssacho
Posts: 1
Joined: Nov 2009

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

mpgerli
Posts: 3
Joined: Apr 2010

Hello
I hope your husband he is doing better. We also live in France, Asnieres sur seine, our soon 31 years old is atteind with Fibrolamellar .
He had two surgery at Beaujon, and we are know in Montreal searching for other treatment. I would like to enter in contact with you and share search together.
Here my email adress: mpgerlicher@aol.com, after your reply we can exchange our mutual phone numbers.
Wish all the best to your husband.
regards

lis777
Posts: 1
Joined: Dec 2009

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

Tammya's picture
Tammya
Posts: 8
Joined: Jun 2004

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

jodiione
Posts: 2
Joined: Jul 2010

Hi there Tammy my name is Jodi. I have been fighting FHC for not quite 2 years now. My cancer is starting to get aggressive. I have a few lesions in my lungs, and I also have 1 mass in my lung that is about 3cm and it grew in about 2 months. At this the point the Nexavar is all I've tried and it has not helped. I go again on Tue to see about high dose radiation on the one large mass, but it may be to close to my heart.

I was wondering where you can receive Iscador injections? From an herbalist or who can even give them? I am looking for any advice, suggestions, and or alternative treament.

I know its been a long time since your post I'm replying to, but I thought I'd try! Best wishes to all with this awful cancer!!

Thanks again!

Jodi

jodiione
Posts: 2
Joined: Jul 2010

Hi there Tammy my name is Jodi. I have been fighting FHC for not quite 2 years now. My cancer is starting to get aggressive. I have a few lesions in my lungs, and I also have 1 mass in my lung that is about 3cm and it grew in about 2 months. At this the point the Nexavar is all I've tried and it has not helped. I go again on Tue to see about high dose radiation on the one large mass, but it may be to close to my heart.

I was wondering where you can receive Iscador injections? From an herbalist or who can even give them? I am looking for any advice, suggestions, and or alternative treament.

I know its been a long time since your post I'm replying to, but I thought I'd try! Best wishes to all with this awful cancer!!

Thanks again!

Jodi

apatt
Posts: 3
Joined: Sep 2010

My husband was diagnosed in 1993 and has survived for 17 years now. Experimental chemo in 1993 did nothing. Radiation did nothing. Ten surgeries have given him the opportunity to watch his children grow up. He is one of the strongest people I know. This is a rare cancer and I have never met anyone else with this type. I found this site today and just wanted to tell everyone to stay hopeful and keep fighting.

ResearchRN
Posts: 1
Joined: Mar 2011

This is the best news I've seen on this type of cancer. Where does he receive treatment and what was most effective? I have a young friend that is 20 yrs old diagnosed at 15 yrs, has had 11 surgeries, cyber knife, and 8 rounds of chemo. He is my hero and anything I can find out to help him would be great.

Thanks,
Jan

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