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Transplant alternatives
I contracted Hep C over 40 years ago, diagnosed about 20 years ago. I had already stopped drinking about that time, but about 10 years ago started having an occasional glass of wine. (Something I am kicking myself for now.) I have had my liver functions monitored faithfully - sometimes they'd go up, sometimes down. I have also had a couple of biopsies and a couple of ultrasounds over the years. 12 years ago, I went on the Hep C medication briefly, but got so sick that I quit. My doctor has never seemed overly alarmed about my liver causing other problems; I have been healthy otherwise, very active, and generally look and feel good. When the new Hep C medication came on the market, I was intrigued. I thought I could get rid of this virus once and for all. Both my primary care and the GI specialist agreed I would be a great candidate. Routine tests were done to get insurance approval, and surprise, surprise - a cancerous tumor was discovered on my liver. I couldn't believe it. I was immediately sent to a major hospital and was told the only thing to do was remove the tumor by microwave ablation, and then have a transplant since my early-stage cirrhosis liver would likely produce more tumors. I was all set to go ahead with a transplant until the ablation. I was one of a very small minority who had a negative reaction to the procedure. Although the entire tumor appears to be gone (MRI confirmed) my gall bladder was disturbed in the process and I was in excruciating pain, relieved by meds, although they caused there own set of problems, for nearly three weeks. The procedure was seven weeks ago, and I still have soreness at the site. Anyway, I am really feeling led by God (my faith is the foundation of my life) to look at alternative ways to keep my liver healthy. I obviously am not drinking any more, and I believe that good nutrition, supplements, exercise, etc. can keep my cirrhosis at bay. I am on a mission to not produce any more tumors! So --- after that long story comes my question.... Has anyone out there been in my situation and not had a transplant. How is that going and what is the lifestyle you have adopted? Thanks for reading all of this - and thanks in advance for any words of wisdom you can share!
Lynn. I'm also so sorry for what you are going thru. As a 2X Cancer patient I know how scarey and difficult this must be for you. My cancer was not in my liver, but I did endure chemo and radiation in order to survive.
I have followed Hector thru his journey and know how difficult it was both physically and emotionally. I'm sure none of us including Hector had envisioned a liver transplant in his future, but know how grateful he is for being given that choice. I will say as hard as it is the hear the reality of this disease, he has given you the truth. I will also add that in so many ways you are extremely lucky to have found it when you did when a transplant is still an option.
Again I'm so sorry that you find yourself facing this decision. I can only tell you that everyone I've talked to or met that have had a transplant live happy and productive lives. I hope after doing some soul searching you will come to embrace the option of wellness.
Warm Wishes
......Kim
I have followed Hector thru his journey and know how difficult it was both physically and emotionally. I'm sure none of us including Hector had envisioned a liver transplant in his future, but know how grateful he is for being given that choice. I will say as hard as it is the hear the reality of this disease, he has given you the truth. I will also add that in so many ways you are extremely lucky to have found it when you did when a transplant is still an option.
Again I'm so sorry that you find yourself facing this decision. I can only tell you that everyone I've talked to or met that have had a transplant live happy and productive lives. I hope after doing some soul searching you will come to embrace the option of wellness.
Warm Wishes
......Kim
COMMUNITY LEADER
I am sorry to hear you had complications from your microwave ablation treatment. I hope you feel better soon. Unfortunately there are complications to HCC treatments. Likely they are temporary. I had 8 different HCC treatments myself over 2 1/2 years so I know what it can be like.
I am sorry to have to tell you the reality of HCC is that the only cure is a liver transplant one the cirrhosis has gone beyond a certain point. Your treatment was only palliative and in time (no one can say when) more tumors will develop. If your don't manage the cancer until you can get a transplant to remove your cancer producing liver, I am afraid the outcome will be death. I had to say it so harshly. But I almost dies myself from HCC and seen too many others die from it to sugar coat it.
HCC has nothing to do with drinking, good nutrition, supplements, exercise, etc. You have CANCER. A cancer that if not treated by transplant is terminal. HCC is a very deadly cancer that has fewer treatment options than many cancers. There are no chemo treatments that cure liver cancer. There is Nexavar which is used to extend life for those whose HCC has metastasized and is terminal. On average people live 3 months more when taking Nexavar.
You don't want to get to that stage if you can at all help it. I was two weeks away from that last option myself before things turned around for me. I would not recommend for anybody to have to go through what you have to go through to be at that point with there cancer.
All of the people that weren't able to get a transplant when they developed HCC and had cirrhosis are no longer with us. I know many people who have had their cancer go too far and died from HCC. It is a horrible way to go. I almost died myself when my cancer became untreatable at a certain point and I was taken off of the transplant list because of it. I had 7 types of cancer treatments 4 TACE, 3 PEI and they all failed to keep my tumor from growing. I was told I only had months to live. Still I didn't want to sit around and wait to die I push to have an experimental cancer treatment. It somehow worked for me and I got my transplant and am alive today because of it.
What you are going through is normal. We go through denial. It is our own minds way of protecting us from what is too much to handle right now. It takes time to come to terms with the reality of needing a liver transplant to stay alive. I have talked to over 500 liver transplant folks from all walks of life. They have all gone through the same thoughts and feelings.
Please understand No one wants a liver transplant. None of us had a transplant because we wanted it. We did it because we wanted to LIVE. When a person with cirrhosis has HCC it is the only option to remain alive.
There are people who don't want transplants for whatever reason. I have met them as well. I am sad to say.. NONE of them are with us any more. That is the scary reality of HCC. For most of us this is the first time we had to confront the reality of our own death. Not as an abstract thought but as a feeling. It is scary. Very scary. None of us is prepared to die. We might imagine we are but when it comes down to it instinct kicks in. That is why many people who at first didn't want a transplant change their minds.
For people with End-stage Liver Disease they get sicker and sicker and suffer more than they could ever imagine. So do it for their families. Because they realize what there death will mean to others. We all come to transplant in our own way.
For us with liver cancer or many other cancers it is different. Most people with cancer feel fine. Not sick at all. So many choose to believe they will be fine. They pretend it is not happening. Unfortunately cancer doesn't care what we think. All it knows is it want to multiply and grow. Think of all the people you have heard of who died of cancer. It didn't care who they were, how much money, power, belief or love they had. Cancer is cruel. If you know anyone who has suffered with cancer you will know that.
I would say keep an open mind.
Our minds change all the time based on what is going on around us.
We always have the right to change our minds.
Remember it takes time to accept what we don't want to except. Give yourself a break. You don't have to make any choices now.
HCC takes time to develop. That is why we have scans every 3-6 months. I would say take it one day at a time. One step at a time. Do what you are doing and keep up with your doctor appointments. As things develop you will have the option to choose what you want to do.
No one can force you to do anything. You do have to treat any recurring cancer. We all have that option. We have the power to choose to die if we want to and how we want to. But most of us rather suffer temporarily so we can live longer.
I don't want to see you or anyone go through what I have because of liver cancer.
Hector
Liver Transplant for HCC 11/16/2013
I am sorry to have to tell you the reality of HCC is that the only cure is a liver transplant one the cirrhosis has gone beyond a certain point. Your treatment was only palliative and in time (no one can say when) more tumors will develop. If your don't manage the cancer until you can get a transplant to remove your cancer producing liver, I am afraid the outcome will be death. I had to say it so harshly. But I almost dies myself from HCC and seen too many others die from it to sugar coat it.
HCC has nothing to do with drinking, good nutrition, supplements, exercise, etc. You have CANCER. A cancer that if not treated by transplant is terminal. HCC is a very deadly cancer that has fewer treatment options than many cancers. There are no chemo treatments that cure liver cancer. There is Nexavar which is used to extend life for those whose HCC has metastasized and is terminal. On average people live 3 months more when taking Nexavar.
You don't want to get to that stage if you can at all help it. I was two weeks away from that last option myself before things turned around for me. I would not recommend for anybody to have to go through what you have to go through to be at that point with there cancer.
All of the people that weren't able to get a transplant when they developed HCC and had cirrhosis are no longer with us. I know many people who have had their cancer go too far and died from HCC. It is a horrible way to go. I almost died myself when my cancer became untreatable at a certain point and I was taken off of the transplant list because of it. I had 7 types of cancer treatments 4 TACE, 3 PEI and they all failed to keep my tumor from growing. I was told I only had months to live. Still I didn't want to sit around and wait to die I push to have an experimental cancer treatment. It somehow worked for me and I got my transplant and am alive today because of it.
What you are going through is normal. We go through denial. It is our own minds way of protecting us from what is too much to handle right now. It takes time to come to terms with the reality of needing a liver transplant to stay alive. I have talked to over 500 liver transplant folks from all walks of life. They have all gone through the same thoughts and feelings.
Please understand No one wants a liver transplant. None of us had a transplant because we wanted it. We did it because we wanted to LIVE. When a person with cirrhosis has HCC it is the only option to remain alive.
There are people who don't want transplants for whatever reason. I have met them as well. I am sad to say.. NONE of them are with us any more. That is the scary reality of HCC. For most of us this is the first time we had to confront the reality of our own death. Not as an abstract thought but as a feeling. It is scary. Very scary. None of us is prepared to die. We might imagine we are but when it comes down to it instinct kicks in. That is why many people who at first didn't want a transplant change their minds.
For people with End-stage Liver Disease they get sicker and sicker and suffer more than they could ever imagine. So do it for their families. Because they realize what there death will mean to others. We all come to transplant in our own way.
For us with liver cancer or many other cancers it is different. Most people with cancer feel fine. Not sick at all. So many choose to believe they will be fine. They pretend it is not happening. Unfortunately cancer doesn't care what we think. All it knows is it want to multiply and grow. Think of all the people you have heard of who died of cancer. It didn't care who they were, how much money, power, belief or love they had. Cancer is cruel. If you know anyone who has suffered with cancer you will know that.
I would say keep an open mind.
Our minds change all the time based on what is going on around us.
We always have the right to change our minds.
Remember it takes time to accept what we don't want to except. Give yourself a break. You don't have to make any choices now.
HCC takes time to develop. That is why we have scans every 3-6 months. I would say take it one day at a time. One step at a time. Do what you are doing and keep up with your doctor appointments. As things develop you will have the option to choose what you want to do.
No one can force you to do anything. You do have to treat any recurring cancer. We all have that option. We have the power to choose to die if we want to and how we want to. But most of us rather suffer temporarily so we can live longer.
I don't want to see you or anyone go through what I have because of liver cancer.
Hector
Liver Transplant for HCC 11/16/2013
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