CSN Login
Members Online: 4

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.

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

Sorry I have taken so long to respond.

I get the Iscador from a homeopath. I really believed that it helped me. When I was on it all my tumors were shrinking nicely, even if I was not on chemo, but I have been off the Iscador now for about 6 months and the tumors have just grown out of control :( ...

The only chemo that seemed to help a bit for this cancer was Avastin, Oxaliplatin and Xeloda combination. I stopped the chemo and Iscador because I was having bleeding complications and was not sure which one caused it. I am starting the chemo again on Tuesday.

Good Luck!

suhmrgl
Posts: 3
Joined: Mar 2011

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

tracyo
Posts: 2
Joined: May 2011

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
Posts: 4
Joined: May 2011

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

DiaMT
Posts: 1
Joined: Aug 2010

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
Posts: 2
Joined: May 2011

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!!!!

suhmrgl
Posts: 3
Joined: Mar 2011

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

suhmrgl
Posts: 3
Joined: Mar 2011

Casey,
Thank you so much for the website and Facebook information. I sent in a friend request today and hope they will add me to their friend list ;)
I appreciate the info!
Tracy
(suhmrgl)

kelcamky
Posts: 3
Joined: Jan 2005

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.

lilbit7680's picture
lilbit7680
Posts: 1
Joined: Sep 2013

My friend passed yesterday with this disease.  He fought for 6 yrs.passed at age 28. I miss him.

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network