Fibrolamellar Liver Cancer

akauf · August 2004

clicata said:
Hello. I am hoping to find information regarding my brother-in-law. He was recently diagnosed with Fibrolamellar carcinoma also. His tumor is 12 cm. He is 39 years old. He has a three year old and an 8 mo. old. We are told that his tumor is unresectable and that his only option is a transplant. I am having a lot of difficulty obtaining information regarding the outcomes and prognosis of the proceedure. His bone and lung scans came out negative, but he did have a small satelite tumor on the other side of the liver. We are in Southern California and have switched from UCI where doctors said only experimental treatment was left.. to UCLA. They seem to be optimistic that a transplant will save him. I am happy to hear that your scans are clear. I can understand your fears. He did have a chemo-embolism (injected chemo into the tumor) but it did not shrink the tumor at all. The treatment itself was horrible and he has lost about 50 lbs and is trying to rebuild. Any information regarding a transplant would be very helpful.

I am so sorry to hear about what your brother-in-law is going through. I do not have any info on transplants and fibrolamellar. Is he scheduled to have a transplant or is there a waiting list? I was first diagnosed with fibrolamellar in 1997 and had two reoccurences since in my lung/chest area but eeach time they were able to go in and surgically remove the tumors. Chemo and this type of tumor after much much research does not seem to really work. Sorry I could not be more helpful with information but I wish your brother in law the best. Please keep me updated. Is he comfortable with the dr's at UCLA?

hollers · September 2004

akauf said:
I agree, this web site is great. Before I found it...I was looking to talk with others that were experiencing what I was with fibrolamellar. I am doing good. I was originally diagnosed in 1997 and had two reoccurences in my lung/chest since then but everything seems to be ok. I go for my next scan in mid-September. I now go every 4 months for scans. Where do you live? I live in NY. Do you know what type of blood work your doctor does?

AllieMatt, I'm glad your last scan came back clean. I'm going in 3 weeks for my next scan, it's been 6 months. My oncologist does some type of marker for my liver enzymes and he does an alfa-feta protein test. I too, still get pains and pinching in my abdomen area, especially if I've been picking up my son alot. I live in Waukesha, Wisconsin which is a suburb of Milwaukee.
Clicata: I'm so sorry to hear about your brother-in-law. Why can't they do surgery? My dr. also told me that chemo does not work on this type of cancer. I hope he gets another opinion. Do you think he has a good doctor?

AllieMatt · September 2004

hollers said:
AllieMatt, I'm glad your last scan came back clean. I'm going in 3 weeks for my next scan, it's been 6 months. My oncologist does some type of marker for my liver enzymes and he does an alfa-feta protein test. I too, still get pains and pinching in my abdomen area, especially if I've been picking up my son alot. I live in Waukesha, Wisconsin which is a suburb of Milwaukee.
Clicata: I'm so sorry to hear about your brother-in-law. Why can't they do surgery? My dr. also told me that chemo does not work on this type of cancer. I hope he gets another opinion. Do you think he has a good doctor?

Holly - I am in Minneapolis. I have family friends that live in Waukesha - the Thiels. It is a big place and I am sure you do not know them, but you are in the same area as me. Where was your surgery? Have you had your scan yet? I have had 4 scans since my surgery to remove 1/2 of my liver on February 2nd. They have all been clear - so I am happy about that. I wish you the best. I am glad (not for the pain) that you are still having a bit of pain as well. I feel like it is just me - that if I was in better shape or something then it would not hurt. By then end of the weekend I am exhausted and holding my side where my liver was removed. What does your scar look like? Mine is like a rainbow arch from the far right side of my side to a bit over the middle. All red and just so pretty! It matches my c-section scar and my 3 little scars from removing my gallbladder! How old is your son? Mine is 3 1/2 and my daughter just turned 1 last week.
Keep me posted on your scans.

hollers · September 2004

AllieMatt said:
Holly - I am in Minneapolis. I have family friends that live in Waukesha - the Thiels. It is a big place and I am sure you do not know them, but you are in the same area as me. Where was your surgery? Have you had your scan yet? I have had 4 scans since my surgery to remove 1/2 of my liver on February 2nd. They have all been clear - so I am happy about that. I wish you the best. I am glad (not for the pain) that you are still having a bit of pain as well. I feel like it is just me - that if I was in better shape or something then it would not hurt. By then end of the weekend I am exhausted and holding my side where my liver was removed. What does your scar look like? Mine is like a rainbow arch from the far right side of my side to a bit over the middle. All red and just so pretty! It matches my c-section scar and my 3 little scars from removing my gallbladder! How old is your son? Mine is 3 1/2 and my daughter just turned 1 last week.
Keep me posted on your scans.

AllieMatt - I had my surgery at Waukesha Memorial Hospital. Unfortunately, I had the operation on Dec. 22nd, so I was stuck there for Christmas. I go for my next scan on Sept. 21st. I usually find out the results within 3 days. My scar looks like a rainbow arch too. It comes down lower on the right side. I tried to put this ointment called Mederma on it, to help the scar look better, but it made my skin itch and burn, so I guess I'll just leave it alone. My oldest son is 5 - he just started Kindergarten and loves it. My baby - he's really not a baby anymore but a toddler, just turned 2. I pick him up alot, so my side still hurts sometimes and I have to hold it or take some Tylenol for the pain. I'll let you know what the results are when I get them. Take Care!

livin · September 2004

hollers said:
AllieMatt - I had my surgery at Waukesha Memorial Hospital. Unfortunately, I had the operation on Dec. 22nd, so I was stuck there for Christmas. I go for my next scan on Sept. 21st. I usually find out the results within 3 days. My scar looks like a rainbow arch too. It comes down lower on the right side. I tried to put this ointment called Mederma on it, to help the scar look better, but it made my skin itch and burn, so I guess I'll just leave it alone. My oldest son is 5 - he just started Kindergarten and loves it. My baby - he's really not a baby anymore but a toddler, just turned 2. I pick him up alot, so my side still hurts sometimes and I have to hold it or take some Tylenol for the pain. I'll let you know what the results are when I get them. Take Care!

Hi everyone looking for any info about liver surgery. I am newly diagnosed on Sept 8th had biopsy Friday the 10th. Doctors plan surgery this week I hope. This is my third Cancer. Breast 1999 Colon 2001. Some times I feel Doomed than other days I feel I can beat this. I know one thing I will never give up. Is there a lot of pain? Will my diet change Was Chemo rough. Colon Cancer I did not get sick ate very very well gain 30 pounds. But with this Liver Cancer no appetite but hasn't lost weight yet. Just looking for some Ideas. I know everyone is different. Thanks Livin

AllieMatt · October 2004

hollers said:
AllieMatt - I had my surgery at Waukesha Memorial Hospital. Unfortunately, I had the operation on Dec. 22nd, so I was stuck there for Christmas. I go for my next scan on Sept. 21st. I usually find out the results within 3 days. My scar looks like a rainbow arch too. It comes down lower on the right side. I tried to put this ointment called Mederma on it, to help the scar look better, but it made my skin itch and burn, so I guess I'll just leave it alone. My oldest son is 5 - he just started Kindergarten and loves it. My baby - he's really not a baby anymore but a toddler, just turned 2. I pick him up alot, so my side still hurts sometimes and I have to hold it or take some Tylenol for the pain. I'll let you know what the results are when I get them. Take Care!

Holly - How did your scan go? I hope things are going ok.
I hope things are well with everyone else too and everybody is still going strong.

hollers · October 2004

AllieMatt said:
Holly - How did your scan go? I hope things are going ok.
I hope things are well with everyone else too and everybody is still going strong.

Hi AllieMatt and everyone!
My last scan was clear, my doctor said everything looked really good. What a relief! My next one will be in 6 months so sometime in March. The pain in my side is starting to go away now too. I go to the oncologist next month for blood work. I feel positive now that I had good news. I was really worried and anxious the last 2 weeks. When is your next one?

AllieMatt · December 2004

hollers said:
Hi AllieMatt and everyone!
My last scan was clear, my doctor said everything looked really good. What a relief! My next one will be in 6 months so sometime in March. The pain in my side is starting to go away now too. I go to the oncologist next month for blood work. I feel positive now that I had good news. I was really worried and anxious the last 2 weeks. When is your next one?

I had a scan yesterday and it came back clear. Another releif. I am almost to my 1 year point. February 2nd was my surgery. I will be glad when I reach that point. My next scan is in March and then they will go to every 6 months from there. I feel relief after every clear scan, but am still very cautious and almost "waiting for the other shoe to drop". I would never want an un-clear scan, but I almost expect one and if I am going to have one, I want to get it over with. I somehow always have the feeling "well, maybe with the next one I will get the bad news". I hate feeling this way, but I do. Does anyone else feel that way? I hardly ever think about it, but when I do that is how I feel. I am still having a lot of pain where my incision is and aksed my oncologist about it. He said that there could be a nerve that grew into the muscle or the bowel or the scar tissue that is causing it. There is no way to find that out unless they open me up and we both don't want to do that. So - he said time should make it feel better and if it does not then we can look at further options. It is almost un bearable sometimes and makes me feel like I am 80 years old. He gave me pain medication for when it gets really bad. Besides that I feel great.
Hope all is well with everyone else.
Holly - you are almost at your 1 year - I hope things are going good.
We all have a lot to celebrate this holiday season.
Cheers.

waterbug · December 2004

AllieMatt said:
I had a scan yesterday and it came back clear. Another releif. I am almost to my 1 year point. February 2nd was my surgery. I will be glad when I reach that point. My next scan is in March and then they will go to every 6 months from there. I feel relief after every clear scan, but am still very cautious and almost "waiting for the other shoe to drop". I would never want an un-clear scan, but I almost expect one and if I am going to have one, I want to get it over with. I somehow always have the feeling "well, maybe with the next one I will get the bad news". I hate feeling this way, but I do. Does anyone else feel that way? I hardly ever think about it, but when I do that is how I feel. I am still having a lot of pain where my incision is and aksed my oncologist about it. He said that there could be a nerve that grew into the muscle or the bowel or the scar tissue that is causing it. There is no way to find that out unless they open me up and we both don't want to do that. So - he said time should make it feel better and if it does not then we can look at further options. It is almost un bearable sometimes and makes me feel like I am 80 years old. He gave me pain medication for when it gets really bad. Besides that I feel great.
Hope all is well with everyone else.
Holly - you are almost at your 1 year - I hope things are going good.
We all have a lot to celebrate this holiday season.
Cheers.

Allie - I am so happy to hear your news! My daughter doesn't get another scan until May 2005 which will be a year between scans. February 6th it will be 2 yrs since the first surgery. It makes me nervous but I keep "letting go" -we trust the doctor. The cancer is slow growing and at a year and a half had no return. We know there are no guarantees but there never were to begin with - I think there is only to go forward in Faith and try to fulfill God's purpose for our lives. I am sorry about the incisional pain. I hope it lessens.
God Bless

hollers · December 2004

AllieMatt said:
I had a scan yesterday and it came back clear. Another releif. I am almost to my 1 year point. February 2nd was my surgery. I will be glad when I reach that point. My next scan is in March and then they will go to every 6 months from there. I feel relief after every clear scan, but am still very cautious and almost "waiting for the other shoe to drop". I would never want an un-clear scan, but I almost expect one and if I am going to have one, I want to get it over with. I somehow always have the feeling "well, maybe with the next one I will get the bad news". I hate feeling this way, but I do. Does anyone else feel that way? I hardly ever think about it, but when I do that is how I feel. I am still having a lot of pain where my incision is and aksed my oncologist about it. He said that there could be a nerve that grew into the muscle or the bowel or the scar tissue that is causing it. There is no way to find that out unless they open me up and we both don't want to do that. So - he said time should make it feel better and if it does not then we can look at further options. It is almost un bearable sometimes and makes me feel like I am 80 years old. He gave me pain medication for when it gets really bad. Besides that I feel great.
Hope all is well with everyone else.
Holly - you are almost at your 1 year - I hope things are going good.
We all have a lot to celebrate this holiday season.
Cheers.

Hi Julie!
I'm so happy that your scan came back clear!! What a relief!! I've been thinking about you. I've tried to email you but my internet wasn't working. It will be a year on Dec. 22nd since I had my surgery, and the pain in my side just went away, so don't feel bad. I was supposed to have my next scan in March, BUT I found out I'm pregnant! I'm due in early July so I'll have to wait until then for my next one. My doctors are not concerned at all. They both said I should be fine and not to worry. Now I'm just trying to get over this "pukey" stage and take care of my two boys.

I hope everyone else is doing well too.

Happy Holidays!

waterbug · January 2005

hollers said:
Hi Julie!
I'm so happy that your scan came back clear!! What a relief!! I've been thinking about you. I've tried to email you but my internet wasn't working. It will be a year on Dec. 22nd since I had my surgery, and the pain in my side just went away, so don't feel bad. I was supposed to have my next scan in March, BUT I found out I'm pregnant! I'm due in early July so I'll have to wait until then for my next one. My doctors are not concerned at all. They both said I should be fine and not to worry. Now I'm just trying to get over this "pukey" stage and take care of my two boys.

I hope everyone else is doing well too.

Happy Holidays!

My daughter now has a breast lump. The doctor thinks it is probably fibrocystic and will do a lumpectomy in a few weeks. Does anybody know if this can be connected to fibrolamellar?

AuthorUnknown · January 2005

waterbug said:
My daughter now has a breast lump. The doctor thinks it is probably fibrocystic and will do a lumpectomy in a few weeks. Does anybody know if this can be connected to fibrolamellar?

Hello,

You may want to contact the American Cancer Society's National Cancer Information Center. They may be able to provide you with information on this topic. Cancer Information Specialists are available 24 hours a day, 7 days a week at 1-800-227-2345.

I hope this information is helpful.

Take care and be well,

Dana
CSN Dana

AllieMatt · March 2005

hollers said:
Hi Julie!
I'm so happy that your scan came back clear!! What a relief!! I've been thinking about you. I've tried to email you but my internet wasn't working. It will be a year on Dec. 22nd since I had my surgery, and the pain in my side just went away, so don't feel bad. I was supposed to have my next scan in March, BUT I found out I'm pregnant! I'm due in early July so I'll have to wait until then for my next one. My doctors are not concerned at all. They both said I should be fine and not to worry. Now I'm just trying to get over this "pukey" stage and take care of my two boys.

I hope everyone else is doing well too.

Happy Holidays!

Holly -
I just read this! Congrats! I am so happy for you! 3 kids huh! You are brave. We think about 3, but I think we are set on our 2 for now. I did ask my doctor just in case what he thought and he said that he would recomend waitng, but it would be fine if I did get pregnant he was sure. Are you considered high risk at all? Are they doing anything different? I am curious about that. HOw is it affecting houw you feel? I would think it may hurt a little more once you start to get bigger if it stretches your scar at all? Maybe not. You will definitly have to keep me posted!
I have another scan next week. I hope this one is clear as well. it will be a year since my first follow up scan so I will feel even more releif after this one. I still have a little pain, but I changed my diet and added some exercise and it has helped a ton. I am not taking any more advil and Tyelnol every day now at least.
I am so sorry that it took me this long to answer you! Please let me know how you are feeling and keep me posted. Are you going to find out what you are having? My best friend had 2 boys and she just had a girl a year ago. I would love another boy! My little girl is much more difficult so far than my boy was and she is only 19 months old!!!!!
Talk to you soon.

Julie

AllieMatt · March 2005

AllieMatt said:
Holly -
I just read this! Congrats! I am so happy for you! 3 kids huh! You are brave. We think about 3, but I think we are set on our 2 for now. I did ask my doctor just in case what he thought and he said that he would recomend waitng, but it would be fine if I did get pregnant he was sure. Are you considered high risk at all? Are they doing anything different? I am curious about that. HOw is it affecting houw you feel? I would think it may hurt a little more once you start to get bigger if it stretches your scar at all? Maybe not. You will definitly have to keep me posted!
I have another scan next week. I hope this one is clear as well. it will be a year since my first follow up scan so I will feel even more releif after this one. I still have a little pain, but I changed my diet and added some exercise and it has helped a ton. I am not taking any more advil and Tyelnol every day now at least.
I am so sorry that it took me this long to answer you! Please let me know how you are feeling and keep me posted. Are you going to find out what you are having? My best friend had 2 boys and she just had a girl a year ago. I would love another boy! My little girl is much more difficult so far than my boy was and she is only 19 months old!!!!!
Talk to you soon.

Julie

Hey everyone and anyone new who is researching this type of cancer: I just had another scan. I am now at 1 year post op and I was clear again. What a releif. My doc said that chance of re-occurance now is very slim. He wants to see me again in 6 months. I know there is always a chance it spread somewhere else, but so far so good. I just wanted to let people out there know some good news.

patc99 · March 2005

AllieMatt said:
Hey everyone and anyone new who is researching this type of cancer: I just had another scan. I am now at 1 year post op and I was clear again. What a releif. My doc said that chance of re-occurance now is very slim. He wants to see me again in 6 months. I know there is always a chance it spread somewhere else, but so far so good. I just wanted to let people out there know some good news.

It is wonderful to actually hear from others who have been diagnosed with fibrolamellar hepatocellular carcinoma. In 10 years of searching, I have never heard of another person who has dealt with this. I was diagnosed at 33 years of age in December, 1994, and had a resection of 60% (entire right lobe) two weeks later. My liver specialist at the time had only heard of one other patient with this disease. No other treatment was avaialble at that time, and it sounds as if that has not really changed much. I've been told to have ct scans every two years for the rest of my life. The last one was last December, on my 10th anniversary - and was clear. Thanks for this site, and the opportunity to meet others...

hollers · March 2005

AllieMatt said:
Hey everyone and anyone new who is researching this type of cancer: I just had another scan. I am now at 1 year post op and I was clear again. What a releif. My doc said that chance of re-occurance now is very slim. He wants to see me again in 6 months. I know there is always a chance it spread somewhere else, but so far so good. I just wanted to let people out there know some good news.

AllieMatt,

Great news!! I'm so happy for you! Now you can breathe a sigh of relief and have a wonderful Spring and Summer!! I'm doing well, almost 6 months pregnant...I'm feeling well. I found out it's another boy! Yikes...3 boys! Anyway, I was due for a cat-scan this month but now I'll have to wait until July. My doctor's are not concerned and they are treating it as a normal - not high-risk pregnancy. :-)

Patc99 - Thank-you for posting your message! It gives me hope and inspiration knowing you've been clear for 10 years!

AllieMatt · April 2005

patc99 said:
It is wonderful to actually hear from others who have been diagnosed with fibrolamellar hepatocellular carcinoma. In 10 years of searching, I have never heard of another person who has dealt with this. I was diagnosed at 33 years of age in December, 1994, and had a resection of 60% (entire right lobe) two weeks later. My liver specialist at the time had only heard of one other patient with this disease. No other treatment was avaialble at that time, and it sounds as if that has not really changed much. I've been told to have ct scans every two years for the rest of my life. The last one was last December, on my 10th anniversary - and was clear. Thanks for this site, and the opportunity to meet others...

Patc99 - what an inspiration you are! It is so great to hear from someone who has been through this a while ago and has had no re-occurences since. It really makes me feel good to hear that. Thanks for the note! Do you have any risidual pain at all? I still have some and wonder if it is just something I will need to learn to live with? Thanks again for posting!

AllieMatt · April 2005

hollers said:
AllieMatt,

Great news!! I'm so happy for you! Now you can breathe a sigh of relief and have a wonderful Spring and Summer!! I'm doing well, almost 6 months pregnant...I'm feeling well. I found out it's another boy! Yikes...3 boys! Anyway, I was due for a cat-scan this month but now I'll have to wait until July. My doctor's are not concerned and they are treating it as a normal - not high-risk pregnancy. :-)

Patc99 - Thank-you for posting your message! It gives me hope and inspiration knowing you've been clear for 10 years!

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

patc99 · April 2005

AllieMatt said:
Patc99 - what an inspiration you are! It is so great to hear from someone who has been through this a while ago and has had no re-occurences since. It really makes me feel good to hear that. Thanks for the note! Do you have any risidual pain at all? I still have some and wonder if it is just something I will need to learn to live with? Thanks again for posting!

I'm glad you found my story positive. I'm still so happy to have found others... No, I really don't have pain any more, although it took a year or two before I was really comforatble physically. Everything just needs to find it's place again! I do get an ache along the right side of my scar when bad weather is coming, which is as or more accurate than most weather forecasts. It took longer for some symptoms to disappear, than for the surgical healing.

I'm wondering how much more is known now than was then. I was told that it was a non-metastesizing, japanese form of cancer, found usually in Japanese men with AIDS or hepatitis, except in the U.S., where it is usually found in women in their 30's. And that it responds best to surgery. It seems from what I'm reading here that this is not all true.

AllieMatt · April 2005

patc99 said:
I'm glad you found my story positive. I'm still so happy to have found others... No, I really don't have pain any more, although it took a year or two before I was really comforatble physically. Everything just needs to find it's place again! I do get an ache along the right side of my scar when bad weather is coming, which is as or more accurate than most weather forecasts. It took longer for some symptoms to disappear, than for the surgical healing.

I'm wondering how much more is known now than was then. I was told that it was a non-metastesizing, japanese form of cancer, found usually in Japanese men with AIDS or hepatitis, except in the U.S., where it is usually found in women in their 30's. And that it responds best to surgery. It seems from what I'm reading here that this is not all true.

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!

Fibrolamellar Liver Cancer

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