fibrolamellar hepatocellular carcinoma

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.

Fibrolamellar Hepatocellular Carcinoma
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.

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.

My name is Martha, My
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 said:

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

Robert
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

alyssacho said:

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

contact
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

Tammya said:

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

Iscador Injections
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 said:

Iscador Injections
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

My husband was diagnosed in
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.

apatt said:

My husband was diagnosed in
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.

Hope
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

suhmrgl said:

Hi Tammya,
I hope you are
Hi Tammya,
I hope you are doing well!!!
My sister was diagnosed with Fibro Lamellar HCC stage 4 in January and is currently going through chemo treatment consisting of Gemzar, Oxaliplatin, and Avastin. She is on her 6th of 8 treatments and had a 2nd PET scan after 1 month of treatment. The scan showed the tumor had not shrunk in size, but did look weaker. It also showed us that it had not spread anywhere else in her body. She will be taken off the Avastin after the 6th treatment so her body can be better prepared for resection surgery in June.
I just found this site and am happy to hear encouraging stories!
Be well and stay strong everyone and I look forward to hearing from others who are experiencing this type of cancer.
Aloha,
Tracy

I was diagnosed with this
I was diagnosed with this awful disease just 3 weeks ago and had surgery on May 2nd. I am so scared. Trying to figure out how to deal with these emotions is overwhelming. Looking to connect with others...

buckshot1 said:

liver cancer
I am newly diagnosed and know how you are feeling. I just had chemoembolization procedure went well some pain same day when pain med wore off ok next day, then 3rd day so painful i went to emergency room took more pain med oxycodone, (bad stuff) now 5th day i feel better no more pain off oxycodone

my advice go to specialist don't fool around with small town doctor

next step is radiation for tumor on rib yae mine had spread before we found original tumor in liver

we never would have found cancer if I had not had a chest injury blowing snow in Jan

good luck with your treatments

what kind of surgery did you have? do you have any other tumors?

Buck

Hi tracyo and bucksot1. I'm Casey and I'm a 1-year survivor of FHC. I had a liver resection May 26th of last year and I'm on a lifelong surveillance plan. I recently graduated from 3 month follow up scans to every 6 months and once I hit the 5 year mark I'll go to yearly scans (though I'll get bloodwork and physicals twice a year). Diagnosis of any cancer is horrible and this one in particular is scary because so little is actually known about it. I've spent the last year searching for and connecting with other survivors - it helps to know we aren't alone. There are other resources where you can connect with other FHC survivors and ask questions. Please check out deliveracure.org and http://www.fibrofoundation.org/ (the latter site will be redone this summer - please stay connected). We also have a small group forming on Facebook. The group is Fibrolamellars of the World Unite! and is a closed group so we'll need to add you (I'm not the admin of the group but can put you in touch with the admin so you can join if you'd like).
Hope this post finds everyone feeling well. Please keep us posted on your progress.
Casey

tracyo said:

Casey and Buck
YES Casey can you send me the information for facebook? My email is always_and_forever_tracy@yahoo.com


I had my resection on 5/2/11. I only had the one tumor in my liver. I don't go for a recheck until early August. Mine was found because I was having gallbladder symptoms so the CT showed something on my liver and it went downhill from there....

I am just terrified.... I have a 5 year old daughter that needs me!!!!

Please stay strong and don't
Please stay strong and don't be terrified...you WILL get through this and come out stronger! My twin sister was diagnosed in January and went through 8 treatments of chemo which actually caused the tumor to shrink 2 cm :-) She then had a central resection and a gall bladder removal done on the 6th of June at USC with Dr. Selby and it went well. The fight is still continuing because she needs to do more chemo after she regains her strength, but her positive attitude along with our support is the real key in beating this disease. We meet with her oncologist next week to determine what the next step will be and we will head down to USC to meet with another oncologist for a second opinion. I know it is a tough fight, especially for the person involved, but it is not a losing battle. Please stay strong and keep us posted.
My thoughts and prayers go out to you!
Tracy