Aa
worried and concerned
I was diagnosed with stage 4 of 4 hepc and cirrhosis my tumor markers are 24 and I have swelling in feet and legs this has went on for a year and my doctor is just sending me from one doctor to another. I really need some answers.
thank you all for your posts, I have been seeing a hepatologist a UVA in charlottsville, va but all I seem to be getting is a huge run a round. My gastonologist and the doctor from charlottsville keep telling me they don't understand what is going on that my case is unique. This has went on for a year now. I am going back May 25th for my second biopsy and ct scan and MRI. I don't know what to do
For your vast knowledge bank...
It is "okay" to have liver cancer and still get a liver transplant. But there is criteria the patient must meet. The "Milan criteria" are applied as a basis for selecting patients with cirrhosis and hepatocellular carcinoma (primary liver cancer) for liver transplantation.
The Milan criteria state that a patient is selected for transplantation when he or she has:
* one tumor smaller than 5 cm
* up to 3 tumors smaller than 3 cm
* no vascular invasion
* no metastatic spread of cancer outside the liver
So for patients with cirrhosis and liver cancer all treatment is used as a "bridge to transplantation". It's purpose is to keep the cancer within Milan criteria so the patient can get a life saving transplant. Treatment is no cure. The 2 tumors that have been obliterated with chemo that I had will in time come back and new tumors will develop. HCC is a fatal irreversible illness over a relatively short period of time. So the goal is to get a transplant before the cancer get out of control and the patient is removed from the transplant list.
Cheers!
Hector
It is "okay" to have liver cancer and still get a liver transplant. But there is criteria the patient must meet. The "Milan criteria" are applied as a basis for selecting patients with cirrhosis and hepatocellular carcinoma (primary liver cancer) for liver transplantation.
The Milan criteria state that a patient is selected for transplantation when he or she has:
* one tumor smaller than 5 cm
* up to 3 tumors smaller than 3 cm
* no vascular invasion
* no metastatic spread of cancer outside the liver
So for patients with cirrhosis and liver cancer all treatment is used as a "bridge to transplantation". It's purpose is to keep the cancer within Milan criteria so the patient can get a life saving transplant. Treatment is no cure. The 2 tumors that have been obliterated with chemo that I had will in time come back and new tumors will develop. HCC is a fatal irreversible illness over a relatively short period of time. So the goal is to get a transplant before the cancer get out of control and the patient is removed from the transplant list.
Cheers!
Hector
Thanks for the "bump up". I missed the post before.
Cheers!
Hector
Me 2, HCC tumors 0, top of the 6th inning and I'm batting.
Tumor free for the first time since June 1, 2011
Cheers!
Hector
Me 2, HCC tumors 0, top of the 6th inning and I'm batting.
Tumor free for the first time since June 1, 2011
Hi! Welcome to the forum.
According to what you write, you need to seek immediate medical help with your condition. Get a referral to go to the nearest liver transplant center in your area. Get copies of your records from your current doctors with blood tests, scans anything you have and bring them with you to your appointment at the transplant center. You can have your doctor’s fax them not records tend to get lose so this is to save you time. Please take this step soon. Even though liver disease progresses slowly I don’t want you to suffer any more than you have to.
Let me preference what I am going to say by using myself as an example. When developed swelling of my feet and ankles where they didn’t even look like any part of me, I knew it was scary. And it is scary but it is not the end of the world by any means. That happened to me about 3 years ago now and I have changed my diet and take “water pills” that keep me from swelling. So there is treatment to manage your symptoms and complications from liver disease. At the transplant center they will tell you how to manage this disease and it really helps to make life more comfortable.
It may take awhile to get an appointment. Don’t worry, as these Liver transplant centers are very busy. But once you get in it will all be easier after take. Meanwhile to lessen the swelling, which is called “edema” by the medical community you need to cut down on your sodium/salt intake. Sodium combined with your liver disease is causing the edema and you may also notice your abdomen being bloated. They are all caused by the same thing. It may take 2 weeks but if you want your edema to go away never pour salt on any food. In fact you will be told to throw away your salt shaker. I haven’t used mine in years. I prefer not waling around looking like I am pregnant as it is not a good look on a 59 years old man. You must also need to avoid restaurant food and processed food. Eat more vegetables and fruits not packaged foods. You should keep your sodium intake to less than 2,000 mg per day. What I am talking about is a healthy very low sodium diet. If your condition is worse you will need “water pills” to reduce the edema. To learn more search the term “ascites” and it will explain why this happens. I have learned to cook so I can control the amount of sodium in my meals.
Swelling in the feet and hands followed by swelling of the abdomen is usually the first sign of advanced cirrhosis (called End-Stage Liver Disease) which is why you must see a hepatologist (specializes in liver disease) at a transplant center. They will do a full workup of your condition and then let you know what your treatment options are.
You may also be very fatigued. This is a universal sign of advanced liver disease. Unfortunately there is no fix for it. The best thing is to stay active but don’t over do it or you will feel worse for days or weeks depending on ill you are.
Before I forget…you must get ultrasounds or other imagining done ever 6 months because once you become cirrhotic the chances of developing liver cancer is increased greatly. And the data from those scans must be interrupted by doctors at a liver center ONLY. They are the only ones that know what to look for liver cancer. It takes a specialist to determine what is cancer and what is something non threatening. You said your AFP tumor marker is “24”. Many patients with hepatitis C and cirrhosis have elevated AFP levels. One thing to keep in mind AFP is never used alone to diagnose liver cancer. AFP must be combined with imaging studies…ultrasound, CT or MRI. AFP is only 60% accurate in detecting liver cancer so there are false positives and false negatives. An indication of liver cancer is numbers in the hundred that rise over time or numbers over 500. So there is nothing to worry about. I have liver cancer, End-Stage Liver Disease and hepatitis C. So what I am telling you is based on my own experience.
You are on the start of a journey. Sometime you will never forget for the rest of your life. Try to take it one day at a time. There will be rough days and good days but you can do this. If myself and my many friends with cirrhosis can do this…so can you. Remember you are not alone in what you are going through. There are a lot of us and many sicker than we are. So it could always be worse. There are doctors and nurses that are good, kind, and experienced people who deal with patients like us everyday and they will help you through this. The main thing is you need a support team around you as you go through this. No one gets though it alone. Your friends, family, everyone that is close to you will be called on to help. There may be a liver support group at the transplant center where you can meet others in your same position. It can really helps when someone else is going through this with you and you can share experiences. Everything I am saying will be explained to you at the transplant center but I just wanted to make you aware that some challenges may come your way. But never give up and you will make it to the other side as so many people I know have. I am hoping to get my liver transplant at the end of the year or early next year after 5 years of having cirrhosis, End-Stage Liver Disease and now liver cancer. I don’t plan on dying any time soon if I can help it and I am planning on regaining my health post transplant so I do not have to live being disabled and I can go back to my regular life again but with renewed strength and appreciation for every day of life I get.
Feel free to send me a private message and I will help you step by step get the help you need.
Hang in there.
You came to the right place and things are going to start getting better because you have been proactive and not let your illness progress any futher.
Cheers!
Hector
San Francisco, CA
According to what you write, you need to seek immediate medical help with your condition. Get a referral to go to the nearest liver transplant center in your area. Get copies of your records from your current doctors with blood tests, scans anything you have and bring them with you to your appointment at the transplant center. You can have your doctor’s fax them not records tend to get lose so this is to save you time. Please take this step soon. Even though liver disease progresses slowly I don’t want you to suffer any more than you have to.
Let me preference what I am going to say by using myself as an example. When developed swelling of my feet and ankles where they didn’t even look like any part of me, I knew it was scary. And it is scary but it is not the end of the world by any means. That happened to me about 3 years ago now and I have changed my diet and take “water pills” that keep me from swelling. So there is treatment to manage your symptoms and complications from liver disease. At the transplant center they will tell you how to manage this disease and it really helps to make life more comfortable.
It may take awhile to get an appointment. Don’t worry, as these Liver transplant centers are very busy. But once you get in it will all be easier after take. Meanwhile to lessen the swelling, which is called “edema” by the medical community you need to cut down on your sodium/salt intake. Sodium combined with your liver disease is causing the edema and you may also notice your abdomen being bloated. They are all caused by the same thing. It may take 2 weeks but if you want your edema to go away never pour salt on any food. In fact you will be told to throw away your salt shaker. I haven’t used mine in years. I prefer not waling around looking like I am pregnant as it is not a good look on a 59 years old man. You must also need to avoid restaurant food and processed food. Eat more vegetables and fruits not packaged foods. You should keep your sodium intake to less than 2,000 mg per day. What I am talking about is a healthy very low sodium diet. If your condition is worse you will need “water pills” to reduce the edema. To learn more search the term “ascites” and it will explain why this happens. I have learned to cook so I can control the amount of sodium in my meals.
Swelling in the feet and hands followed by swelling of the abdomen is usually the first sign of advanced cirrhosis (called End-Stage Liver Disease) which is why you must see a hepatologist (specializes in liver disease) at a transplant center. They will do a full workup of your condition and then let you know what your treatment options are.
You may also be very fatigued. This is a universal sign of advanced liver disease. Unfortunately there is no fix for it. The best thing is to stay active but don’t over do it or you will feel worse for days or weeks depending on ill you are.
Before I forget…you must get ultrasounds or other imagining done ever 6 months because once you become cirrhotic the chances of developing liver cancer is increased greatly. And the data from those scans must be interrupted by doctors at a liver center ONLY. They are the only ones that know what to look for liver cancer. It takes a specialist to determine what is cancer and what is something non threatening. You said your AFP tumor marker is “24”. Many patients with hepatitis C and cirrhosis have elevated AFP levels. One thing to keep in mind AFP is never used alone to diagnose liver cancer. AFP must be combined with imaging studies…ultrasound, CT or MRI. AFP is only 60% accurate in detecting liver cancer so there are false positives and false negatives. An indication of liver cancer is numbers in the hundred that rise over time or numbers over 500. So there is nothing to worry about. I have liver cancer, End-Stage Liver Disease and hepatitis C. So what I am telling you is based on my own experience.
You are on the start of a journey. Sometime you will never forget for the rest of your life. Try to take it one day at a time. There will be rough days and good days but you can do this. If myself and my many friends with cirrhosis can do this…so can you. Remember you are not alone in what you are going through. There are a lot of us and many sicker than we are. So it could always be worse. There are doctors and nurses that are good, kind, and experienced people who deal with patients like us everyday and they will help you through this. The main thing is you need a support team around you as you go through this. No one gets though it alone. Your friends, family, everyone that is close to you will be called on to help. There may be a liver support group at the transplant center where you can meet others in your same position. It can really helps when someone else is going through this with you and you can share experiences. Everything I am saying will be explained to you at the transplant center but I just wanted to make you aware that some challenges may come your way. But never give up and you will make it to the other side as so many people I know have. I am hoping to get my liver transplant at the end of the year or early next year after 5 years of having cirrhosis, End-Stage Liver Disease and now liver cancer. I don’t plan on dying any time soon if I can help it and I am planning on regaining my health post transplant so I do not have to live being disabled and I can go back to my regular life again but with renewed strength and appreciation for every day of life I get.
Feel free to send me a private message and I will help you step by step get the help you need.
Hang in there.
You came to the right place and things are going to start getting better because you have been proactive and not let your illness progress any futher.
Cheers!
Hector
San Francisco, CA
You have tumors in your liver and they haven't acted quickly upon this? Did they not do a scan to see how many or how large? I do not believe you can do treatment or transplant with liver cancer...we have a man here that would know much more than any of us, bumping so he may see this.
Something about this sounds so wrong here...
Hector where are you?
Something about this sounds so wrong here...
Hector where are you?
I will try to bump your post back up to the top so some of the knowledgeable people on the forum will see it and respond.
LOL, I was wondering about that. :) thought the hell was about the tumor marker. Poor guy. Its all good, let the fingers do the walking............. :)
Oh my, I wish we could edit our posts.
My greeting was supposed to say,
"Hello and welcome to the forum."
NOT "hell and welcome to the forum"
My greeting was supposed to say,
"Hello and welcome to the forum."
NOT "hell and welcome to the forum"
have you discussed treatment yet. I would think sooner would be better than later.
Hell and welcome to the forum.
You have not given us very much iformation to work with. If you can tell us a little more about yourself we may be able to give better responses.
Yoy said you have:
Hep C
Stage 4 (fibosis?)
Cirrhosis
Tumor Markers of 24
Where do you live, approximately? In the US or another country? Which state if in the US?
What Genotype are you?
Have you had a liver biopsy?
What type of doctor are you seeing and what types of doctors has he sent you to?
Have you seen a hepatologist?
I am not an expert and I don't know much about you, but I do know that you should be seeing a hepatologist who is experienced in treating Hep C and you should be receiving your care from the hepatologist at a major university affiliated medical center or a major medical center that does transplants. If you are not now being seen by a hepatologist at a major medical center, that would be your first step, getting an appointment with an experienced doctor who is knowledgeable about Hep C, cirrhosis and transplants.
I am hoping that by bumping your post to the top, one of the more knowledgeable people on the forum will see your post and respond. But they can respond much better if you supply more information.
You have not given us very much iformation to work with. If you can tell us a little more about yourself we may be able to give better responses.
Yoy said you have:
Hep C
Stage 4 (fibosis?)
Cirrhosis
Tumor Markers of 24
Where do you live, approximately? In the US or another country? Which state if in the US?
What Genotype are you?
Have you had a liver biopsy?
What type of doctor are you seeing and what types of doctors has he sent you to?
Have you seen a hepatologist?
I am not an expert and I don't know much about you, but I do know that you should be seeing a hepatologist who is experienced in treating Hep C and you should be receiving your care from the hepatologist at a major university affiliated medical center or a major medical center that does transplants. If you are not now being seen by a hepatologist at a major medical center, that would be your first step, getting an appointment with an experienced doctor who is knowledgeable about Hep C, cirrhosis and transplants.
I am hoping that by bumping your post to the top, one of the more knowledgeable people on the forum will see your post and respond. But they can respond much better if you supply more information.
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