My mom has HCC

[kandy777]

I want to share my mom’s fight against HCC, she got Hepatitis C through a blood transfusion when she was only a teenager, she had successfully gone through very harsh treatments to kill the hepatitis C virus in her late 60s and has been virus free and able to enjoy life for couple of years afterwards but now she is 75 and diagnosed with cirrhosis of the liver and HCC. The doctors tell me there are literally hundreds of small tumors all over her liver with the largest one being 11cm. They gave her 4 months to live last year, now a year later she is thankfully still with us but still battling the liver cancer. She has maxed out on Y-90 treatments(3 times) and chemo embolizations are no longer a viable option as it has spread to other areas. She was then put on Opdivo but had very poor response to Opdivo and now we are down to the last treatment option which is Lenvima. She has been taking Lenvima for almost 2 months now and it has not caused her any side effect issues thankfully, we will find out soon if Lenvima is working or not, has anyone else taken Lenvima before for liver cancer and what is your experience with this medicine? Any suggestions on other treatment options to look into? My mom has also tried nexavar and developed a horrible rash all over while on it so she had to stop taking that one.

[andersoncathl Caregiver]

Hi There,

I'm so sorry to hear about your mother's long battle. I am not a doctor myself and don't have any personal history with this specific situation so I don't have a treatment to suggest. I seem to recall someone else on this forum who mentioned a treatment he was trying that was working that might be an option so maybe if you searched back through the messages you could see what that was. It was something pretty recently made available for HCC. I don't think it was the same as the ones you mentioned. I sure wish you and your mother the very best. She is lucky to have you helping her through all of this!

[kandy777 Caregiver in reply to andersoncathl]

Thank you for your kind comments!

[AndreaWilson_Founder Partner Editor Caregiver]

Hello Kandy,

I'm so sorry to hear about your mother. Lenvima was recently approved as a first-line treatment (a sort of competitor to Nexavar) for patients with advanced HCC. It is not a curative drug; it is palliative. Its purpose is to extend life. It is not a cure. I only stress this point because too many doctors do not explain this factor to their patients.

Normally, I would recommend looking at clinical trials; however, given your mother's medical history and age, I'm not sure if she would qualify for anything. The most important thing right now is — how does your mother feel? Does she enjoy life? I'm happy to discuss further (and even give you my #). Please email me at [e-mail]

~Andrea Wilson

President & Founder

[kandy777 Caregiver]

My mother has passed away 2 weeks ago. Her battle with HCC has ended now, I am wondering what we could have done differently maybe she would have lived longer if she didn’t have to take all of these cancer drugs which killed her appetite and energy..towards the end she was literally skin and bones and had no strength left to eat and could not even drink water. The lenvima did seem to work against her liver tumors and each CT scan showed that the tumors were shrinking however she became so weak that she could not walk, talk or move much and her lungs, abdomen and limbs filled with fluid. Was this caused by lenvima or the cancer? This question is in my mind for which I have no answer.