My mom was recently diagnosed with HCC, had surgery in February 2013. Her two thirds of the liver have been removed. The biopsy showed M3T1N0. Now she found out she has multiple tumors up to 3 cm in the left over part of her liver. Her AFP is 1470.
Any suggestons, comments...
Hi caretaker! You might want to post this in the liver disorders community. Even in the cirrhosis of the liver community. Hopefully someone will be able to help you. Both are a little slower then the hep c forum. Hang tight you'll get some help. The best to both of you!
I'm so sorry your having to go through all this. It sounds like your mother has had extensive medical care. People on this forum aren't doctors and your
mothers condition is very serious. Hopefully you can get some suggestions
from the Cancer forum, Cirrhosis of the Liver Forum, Transplant forum, Ask
a Doctor forum and Liver Disorders forum as mzkity suggested. I would ask
in every forum that pertains to your mothers current condition. Even though
she has Hepatitis C - Her current condition of Cancer is the main focus and any treatment that might be available for treating her HCC.
I am in a similar situation as your mother from what I can tell. She is not allowed a transplant correct? This is because your liver cancer disease has advanced beyond the criteria necessary for patients to get a liver transplant.
The criteria is called the Milan criteria (how many tumors and what size limits) and the US criteria for patients with HCC which limits transplant to patients with AFP levels under 1,000. AFP has to be under 500 at time of transplant.
I see you are in San Jose. What transplant center is she being treated at?
Stanford or UCSF?
Both are very good. UCSF is more open to doing cutting edge procedures.
I have been going to UCSF for 5 + years now. I have hep C, advanced cirrhosis and liver cancer and may be in the exact position your mother is in. UCSF is trying some experiment things on me trying to save my life for which I am grateful for. I only want a chance to prove I would be an excellent candidate for transplant but my cancer makes that hard to prove. The problem is that if me or your mom get to receive donor livers if we have too much cancer now we will die from liver cancer shortly after our transplants. As much as I burn to live and can see how a transplant will solve nothing but waste a good donor liver for someone who can live for 10-20 with the same organ.
Since I don't know the details of her condition I can't say whether she would be able to get a transplant at even the most cutting edge transplant center.
What needs to be down is the try to reduce the size and the number of tumors to be within the criteria and then hope the AFP level comes down under 500. If that can be done and she has no spreading of her cancer outside of her liver she may again be eligible for transplant.
I wish I had better news.
I am terribly sorry to tell you this. I hope this is not the first time you have heard this. I would like to help you mom. Just send me a private message and we can talk about liver cancer and transplant. Whatever I can do to help both her and you I will do. Just ask. I am trying to spend whatever time I have left helping others, especially fellow HCC sufferers. As part of my background you should know that I have met about 200 transplant patients and I am a member of the UCSF liver transplant support group. I have volunteer with Donate Life California and have helped a number of people get liver transplants.
The most important thing right now is to love your mom. She is probably more frightened then you know. Only doctors can cure our cancer but only love allows us to make it through the tough days. Feeling alone when you may die is the worst thing about liver cancer. I hope all your other family members are supporting her too in whatever ways they can.
Again I would like to help if I can just to talk to someone in the same position can be of great relief. Knowing you are not the only one in that situation is freeing.
Much love and caring to you an your mom.
Please post all future messages in the Cirrhosis of the Liver Community forum. There is no community for HCC/Liver cancer.
San Francisco, CA
MELD score 33 with cancer exception points
4 TACE treatments
AFP over 1,000
In clinical trial for 36 weeks using Sofosbuvir + Ribavirin = UND
Thanks for your reply. Unfortunately my mom does not live in US, she lives in Eastern Europe and the medical care there is not as up to date as here in US.
If you know about any of the clinical trials here in US, please let me know. Maybe I can bring her over here.
Thanks again for all the support
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