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.
My mom has HCC: I want to share my mom... - Blue Faery Liver ...
My mom has HCC
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!
Thank you for your kind comments!
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 andrea@bluefaery.org
~Andrea Wilson
President & Founder
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.
Hi there Kandy777 I am 25 years old from Australia and my mum 63 has recently been diagnosed with HCC met. to the lungs. Since hearing of her diagnosis I have been searching all the information I can to try and understand it a bit better as this is so out of the blue and I noticed your comment about the fluid buildup and I just wanted to mention my mum has gotten the same but has had zero treatment I think they call it Ascites and it was from the cancer. Take care or yourself, 1dayatathyme x
Hi. I'm so sorry to hear about your Mom. My husband Jimmy had HCC but we lost him 2 years ago. I know here in the US, he was on two different water pills/diuretics from his GI to help keep the swelling down. When the Ascites gets to a certain point, they can drain it. It's caused by the liver damage. Is she still seeing someone besides the Oncologist? If she's not on a diuretic you may want to ask the doctor about it. It can be very uncomfortable when it builds up. I hope you can get some help with it.
Thank you, I appreciate your kind words. My mom has passed away from her battle with liver cancer and I know that she is in a good place now, not suffering anymore.
Thank you both very much for your kind replies it means a lot, Mum did have to get the ascites drained 2 times in Nov/Dec 2024 but it has since slowed down, she was sent to the hospital late December 2024 and was admitted for a few days, she doesn't want any treatment and the Dr has said there is nothing more they can do and have discharged her back home. I have been told very little about her condition as she does not want to know but I am curious if you might have any insight about life expectancy with this illness as I feel she has rapidly declined since being home this week. Any information is greatly appreciated, and I thank you both again for taking the time to reply her symptoms are, blotchy red hands, rapid weight loss, no food for the last 6 weeks just protein drinks, minimal mobility and lays in bed most of the day, gasping for breath that looks like yawning almost, yesterday she had bleeding from the mouth and was hallucinating that a turtle was biting her on the back - I know Mum better than anyone and I have never seen her like this. Take care, 1dayatathyme x
My husband Jimmy stopped treatment and went on Hospice because the treatment was at the point that it was causing more harm than good. He was actually on Hospice for almost a year because he got stronger when he wasn't getting the treatment and his other symptoms and pain were being better managed by the Hospice team. So he was able to do things up until his liver shut down on Tuesday morning. He couldn't get out of the bed or he'd fall and didn't want to eat or drink. E was worse Wednesday morning as far as his vitals so we called the family in to say goodbye while he still could talk to them and respond. He had prayed that he'd go fast when it got to that point and it did. His blood pressure and heart rate kept dropping and several times during the night I was afraid he was gone but he hung on. Thursday morning he told me that he wanted the supplemental oxygen (which was only helping him be cognizant enough to respond) because he was tired and he was ready. After that he couldn't talk but would squeeze my hand or blink and get agitated if he couldn't see or hear me. The nurse came to check him twice that day. The second time around 3pm and said it wouldn't be long. I was laying down with my head on his chest when he stopped breathing about an hour later. So his was fast and pretty peaceful and just like he wanted -at home with mine the last face he saw and the last words he heard were me telling him how much I loved him. I know some do have a longer period between being bedridden and when they pass. Do y'all have anything like Hospice to help you ? I know ours was such a Blessing. I will keep y'all in my prayers.
Yes, ascites rings a bell..that's what my mom had too. I wish you and your mom all the best, I hope she beats the cancer! 🙏
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