Aa
Scared of incivek treatment
I am 70 years old. Have had hep c probally 30 years. I have cirrosis and failed treatment with riv and inf in 2005. Reading posts I wonder if I will be able to live with all the side effects of 3 way treatment? I am really scared. Should I take treatment?
Hector, I don't know how to choose you as best answer, any help? Thanks for you time and support for me.
I am in your exact position. I am Child's Class A cirrhotic and was a null responder. ?Best I'd ever done was a 1.9% log drop. I agree with the others that you should see a hepatologist if you are considering treatment. My doctor does not feel it is worth the risk to me for only a 13-14% chance of SVR. The adverse effects in someone of our age and with cirrhosis are much more serious than the younger generation with not as much damage. BTW I have had cirrhosis since at least 1992 and I am still here, wating for an interferon free treatment.
Everyone above has given really good advice. Hector has given you invaluable information, as he always does
I have cirrhosis as well. I just finished treatment 3 months ago. I have been und since the 4th week. Saying that, it was a very hard tx. I had done a triple tx back in 2008 which I relapsed from and thought I knew what I was in for. I didn't. Now, I am so glad that I treated. I feel better than I have in many years. Hep C is an insidious disease and it takes away the you in you without you really realizing. That is just me. I am getting the "spark" of me back and I am happy again and look forward to each and every day, I feel I have been given a gift, a second chance to enjoy life again for the first time in years. I treated because I could not stand the way I felt and though that the benefit, if it worked, would be worth the risk. I was also lucky in that my doctor had me treat for 24 weeks. I feel very lucky. I am happy to hear that you have someone to help you. My husband was great. I have to say the first 12 weeks my husband was driving to the pharmacy several times a week to try to find things to help with the side effects. I think Hector is right, you need to weigh the risk vs benefits.
If I were you I would do many searches here on the forum and on the internet. Good luck to you
Dee
I have cirrhosis as well. I just finished treatment 3 months ago. I have been und since the 4th week. Saying that, it was a very hard tx. I had done a triple tx back in 2008 which I relapsed from and thought I knew what I was in for. I didn't. Now, I am so glad that I treated. I feel better than I have in many years. Hep C is an insidious disease and it takes away the you in you without you really realizing. That is just me. I am getting the "spark" of me back and I am happy again and look forward to each and every day, I feel I have been given a gift, a second chance to enjoy life again for the first time in years. I treated because I could not stand the way I felt and though that the benefit, if it worked, would be worth the risk. I was also lucky in that my doctor had me treat for 24 weeks. I feel very lucky. I am happy to hear that you have someone to help you. My husband was great. I have to say the first 12 weeks my husband was driving to the pharmacy several times a week to try to find things to help with the side effects. I think Hector is right, you need to weigh the risk vs benefits.
If I were you I would do many searches here on the forum and on the internet. Good luck to you
Dee
I am in the same category as you pathologically and was a null responder and have 2 months left of my 48 weeks of triple therapy....There are 2 parts to this: #1 Can you handle the side effects because there will be side effects for the first 12 weeks if you choose Incivek (It is much much easier post Incivek with just the Ribo/Interferon combo from my experience). #2 Is it worth your effort given the 14% SVR rate for Null/Cirrhotics like us. I was speaking to my girlfriend (she is an R.N. in research management and oversight) and it is possible that when the sample size is larger it might climb above the 14% stat. If you postpone your decision stick around here and pay attention to which Cirrhotic/Nulls achieve a sustained viral response......They will be your guides! On my side of the story I am very very "antsy" because I achieved an early viral response (undetectable within 3 weeks) which consequently left me feeling like my death sentence had been commuted...Now i'm waiting to see whether the commute will be overturned....My best. d
My Gastroenterologists said I was Class A compensated cirrhosis. I was a nulll responder in 2005. 14% doesn't sound like a very good chance. I recectly saw my Gastroenterologists and was asked if I wanted to take new treatment. I said yes and was approved thru medicare. I started reading post on forums and got scared and bailed before starting treatment. Previously I have had ascites. Between 02/2009 and 04/2011 I had 29 paracentesis. Then it stopped and have not had ascites since. I have a wife to help support me in whatever I do. I am not sure I will be able to find a Hepatologist to help me. I need to do a little more research. I thought my Gastroenterologists would know what was best for me. He treated me in 2005 treatment. Thanks to all for responding to my post.
My first treatment i was listed as a non responder even though i had a 2 log drop and cleared by week 24 before relapsing 4 weeks post treatment. If thats the case your odds are would be better then what Hector listed, BTW, I am also cirrhotic.
Hello.
You have gotten some great information from the other folks here.
To expand on their answers I would like to add a few things.
First having cirrhosis can mean a wide degree of illness. Cirrhosis is divided into three separate classes that represent three very different levels of severity of liver illness. This measuring system is called the Child-Pugh score. The Model for End-Stage Liver Disease (MELD) is also used at transplant centers to determine where patients are on the transplant list. I use the 3 classes instead of the 6-40 MELD score because it is easier to understand.
Class A - is early cirrhosis. It is also known as compensated cirrhosis. This is when the liver has become scarred by (in your case) the hepatitis C virus. The liver is still able to perform all of its functions but the liver is beginning to impact on other organ systems. The spleen will be enlarged. Platelet count will drop. Portal hypertension will develop and blood to flow through collateral veins will create esophageal varices (enlarged veins where the esophagus meets the stomach.
Class B - is also know as decompensated cirrhosis. At this point the liver is too damaged to do hepatitis C treatment.This is when so much of the liver is damaged that the liver is no longer able to perform all of its functions so complications of liver disease manifest themselves. A patient's esophageal varices may start to bleed resulting in vomiting blood which can be life-threatening if too much blood is lost. Ascites develops. This is when fluid leaks out of the veins and into the abdomen making the patient's belly extended as though they are pregnant. Hepatic Encephalopathy can also develop where the brain is effected by toxins in the blood that the liver is no longer able to filter out of the blood. This results in poor memory, poor coordination, strange behavior, stupor and even coma. Again some of these complications can result in death.
Class C - is when the medications to manage to the disease become ineffective and a patient is having life-threatening complications on a regular basis. The patient is often hospitalized periodically and will be waiting for a transplant in the near future.
Since you don't mention any complications I assume you still have Class A, compensated cirrhosis.
The reason that every one is saying that you need to seek help at a transplant center is that only a transplant center with its resources can evaluate completely status of your health situation. You need to know exactly how damaged your liver is in order to properly assess the risk vs benefit of treating your hepatitis C at this time. The danger is if you were to treat and your liver is not healthy enough to deal with the very powerful treatment drugs, the treatment itself could cause your cirrhosis to decompensate or worse, cause your liver to fail. This means you would need a liver transplant very soon in order to continue living. For this reason many hepatologist will put a cirrhotic patient on the transplant list BEFORE treating with the hepatitis C treatment in case something should happen. I don't want to over dramatize the situation but you must realize that cirrhosis of the liver can be a fatal disease and it should never been taken lightly.
When you say you were a previous non-responder to treatment. Do you mean you were a null-responder (your viral load never dropped 2 log over 12 weeks) or a partial responder (had at least a 2-log decrease in hepatitis C viral load during HCV treatment) but never became undetectable? Depending on which way you responded will get you the chances of the new triple treatment working. Are you aware of the odds?
'Telaprevir SVR Rates by Baseline Fibrosis Stage and Prior Response
Null responders
No, minimal or portal fibrosis = 41%
Bridging fibrosis = 39%
Cirrhosis = 14%
Prior Partial Responders
No, minimal or portal fibrosis = 72%
Bridging fibrosis = 56%
Cirrhosis = 34%'
Since you say you are really afraid of treatment it appears that your current doctor has not informed you about the risk of not treating and having your liver disease progress to the point where it is too risky to treat (decompensation) and then the only option would be transplant.
Personally if I were you, I would find out first, are you still healthy enough to treatment? If yes then I would take the chance even if the odds were only 14%. If 34% all the better. To me I would try to do everything in my power to avoid a transplant.
I hope this helped to explain why it is so very important for you to get evaluated at a liver transplant center.
'Baylor All Saints Medical Center' is one of the best in the country.
Fort Worth, TX - Learn more about our transplant services by calling 1.800.774.2487
http://www.baylorhealth.com/SpecialtiesServices/transplantservices/pages/default.aspx
Good luck to you!
Hector
You have gotten some great information from the other folks here.
To expand on their answers I would like to add a few things.
First having cirrhosis can mean a wide degree of illness. Cirrhosis is divided into three separate classes that represent three very different levels of severity of liver illness. This measuring system is called the Child-Pugh score. The Model for End-Stage Liver Disease (MELD) is also used at transplant centers to determine where patients are on the transplant list. I use the 3 classes instead of the 6-40 MELD score because it is easier to understand.
Class A - is early cirrhosis. It is also known as compensated cirrhosis. This is when the liver has become scarred by (in your case) the hepatitis C virus. The liver is still able to perform all of its functions but the liver is beginning to impact on other organ systems. The spleen will be enlarged. Platelet count will drop. Portal hypertension will develop and blood to flow through collateral veins will create esophageal varices (enlarged veins where the esophagus meets the stomach.
Class B - is also know as decompensated cirrhosis. At this point the liver is too damaged to do hepatitis C treatment.This is when so much of the liver is damaged that the liver is no longer able to perform all of its functions so complications of liver disease manifest themselves. A patient's esophageal varices may start to bleed resulting in vomiting blood which can be life-threatening if too much blood is lost. Ascites develops. This is when fluid leaks out of the veins and into the abdomen making the patient's belly extended as though they are pregnant. Hepatic Encephalopathy can also develop where the brain is effected by toxins in the blood that the liver is no longer able to filter out of the blood. This results in poor memory, poor coordination, strange behavior, stupor and even coma. Again some of these complications can result in death.
Class C - is when the medications to manage to the disease become ineffective and a patient is having life-threatening complications on a regular basis. The patient is often hospitalized periodically and will be waiting for a transplant in the near future.
Since you don't mention any complications I assume you still have Class A, compensated cirrhosis.
The reason that every one is saying that you need to seek help at a transplant center is that only a transplant center with its resources can evaluate completely status of your health situation. You need to know exactly how damaged your liver is in order to properly assess the risk vs benefit of treating your hepatitis C at this time. The danger is if you were to treat and your liver is not healthy enough to deal with the very powerful treatment drugs, the treatment itself could cause your cirrhosis to decompensate or worse, cause your liver to fail. This means you would need a liver transplant very soon in order to continue living. For this reason many hepatologist will put a cirrhotic patient on the transplant list BEFORE treating with the hepatitis C treatment in case something should happen. I don't want to over dramatize the situation but you must realize that cirrhosis of the liver can be a fatal disease and it should never been taken lightly.
When you say you were a previous non-responder to treatment. Do you mean you were a null-responder (your viral load never dropped 2 log over 12 weeks) or a partial responder (had at least a 2-log decrease in hepatitis C viral load during HCV treatment) but never became undetectable? Depending on which way you responded will get you the chances of the new triple treatment working. Are you aware of the odds?
'Telaprevir SVR Rates by Baseline Fibrosis Stage and Prior Response
Null responders
No, minimal or portal fibrosis = 41%
Bridging fibrosis = 39%
Cirrhosis = 14%
Prior Partial Responders
No, minimal or portal fibrosis = 72%
Bridging fibrosis = 56%
Cirrhosis = 34%'
Since you say you are really afraid of treatment it appears that your current doctor has not informed you about the risk of not treating and having your liver disease progress to the point where it is too risky to treat (decompensation) and then the only option would be transplant.
Personally if I were you, I would find out first, are you still healthy enough to treatment? If yes then I would take the chance even if the odds were only 14%. If 34% all the better. To me I would try to do everything in my power to avoid a transplant.
I hope this helped to explain why it is so very important for you to get evaluated at a liver transplant center.
'Baylor All Saints Medical Center' is one of the best in the country.
Fort Worth, TX - Learn more about our transplant services by calling 1.800.774.2487
http://www.baylorhealth.com/SpecialtiesServices/transplantservices/pages/default.aspx
Good luck to you!
Hector
curious when you say you were a non-responder, did you never become und or did the virus come back after stoping treatment/ There is a huge difference, and might tell weather you should risk treating again with these 3 drugs.
Dee makes a good point about help in case you need it.
I am 66 and I live alone. I had no help except for someone to drive me to my biopsy. I did okay although there were times that I wished someone was here to cook, do the dishes, sweep and vacuum, put out the garbage, and so on.
I did make some preparations before starting treatment (stocking up on food, stocking up on anything heavy like cat litter, putting a few precooked foods in the freezer for quick cooking, cleaned the entire house frrom top to bottom).
Getting a referral to a transplant center and finding a knowledgeable Hepatologist is the most important thing right now.
I am 66 and I live alone. I had no help except for someone to drive me to my biopsy. I did okay although there were times that I wished someone was here to cook, do the dishes, sweep and vacuum, put out the garbage, and so on.
I did make some preparations before starting treatment (stocking up on food, stocking up on anything heavy like cat litter, putting a few precooked foods in the freezer for quick cooking, cleaned the entire house frrom top to bottom).
Getting a referral to a transplant center and finding a knowledgeable Hepatologist is the most important thing right now.
Hello, welcome to the forum.
I was afraid as well when I first started with the Incivek, Inf and Riba
I am now 3 months post tx and am very happy I treated. That being said will you have anyone to help you out when you treat? While everyone here would be more than supportive you might need help at home.
I am 55 with cirrhosis and prior relapser and I do not think I could have done it by myself. Of course we never know what we can do until it happens. I would do more research and also find a very good hepatologist in your area
I wish you the best and please ask any questions you may have.
Dee
I was afraid as well when I first started with the Incivek, Inf and Riba
I am now 3 months post tx and am very happy I treated. That being said will you have anyone to help you out when you treat? While everyone here would be more than supportive you might need help at home.
I am 55 with cirrhosis and prior relapser and I do not think I could have done it by myself. Of course we never know what we can do until it happens. I would do more research and also find a very good hepatologist in your area
I wish you the best and please ask any questions you may have.
Dee
As noted below, most Gastroenterologists have some basic education and training concerning managing liver diseases, but Hepatologists devote most of their time to the study, treatment and management of liver diseases. The Hepatologists are the experts in treating liver diseases.
If you were at Stage 1 or 2 (or even 3) you probably could get by with just a Gastroenterologist. But you have cirrhosis. Cirrhosis can add more problems to the picture when treating. You said you were a prior non-responder. That factor and the fact that you have cirrhosis means you would have to treat for 48 weeks. If I were you, I would want the very best and the most knowledgeable liver specialist I could find and that would be a Hepatologist. In addition, you need a Hepatologist to follow and manage any complicationsthat you may have from treating.
Cirrhosis can be minimal or it can be severe (and life threatening). Determining where you stand and determining what condition your liver is in is exceptionally important. Therefore you need a referral to a liver transplant center in Texas. (Your doctor can refer you to a transplant center). A transplant center has the best medical team for evaluating your liver disease and for managing your liver disease. Advanced liver disease is very a very complicated disease and only transplant centers have the knowledge and experience to monitor and care for cirrhotic patients like you. There are transplant centers in Texas and I am hoping someone from Texas will chime in with some contact information.
"A hepatologist is a physician who has obtained special training in liver diseases. All hepatologists are trained in general Internal Medicine (adult medicine). They then undergo special training at a liver center. Hepatology training is one element of training in Gastroenterology, and all gastroenterologists should have basic skills in the management of liver diseases. However, to ensure the highest level of care for liver diseases it is reasonable to seek physicians who have dedicated themselves to the discipline of Hepatology. These physicians devote 80% or more of their time to the study, treatment and management of liver diseases. Most large cities have one or more hepatologists. Many are affiliated with University based hospitals because of the need for multidisciplinary care by specially trained liver transplant and hepatobiliary surgeons, liver pathologists and special radiology services."
http://www.hepato-site.net/hepatologists.html
If you were at Stage 1 or 2 (or even 3) you probably could get by with just a Gastroenterologist. But you have cirrhosis. Cirrhosis can add more problems to the picture when treating. You said you were a prior non-responder. That factor and the fact that you have cirrhosis means you would have to treat for 48 weeks. If I were you, I would want the very best and the most knowledgeable liver specialist I could find and that would be a Hepatologist. In addition, you need a Hepatologist to follow and manage any complicationsthat you may have from treating.
Cirrhosis can be minimal or it can be severe (and life threatening). Determining where you stand and determining what condition your liver is in is exceptionally important. Therefore you need a referral to a liver transplant center in Texas. (Your doctor can refer you to a transplant center). A transplant center has the best medical team for evaluating your liver disease and for managing your liver disease. Advanced liver disease is very a very complicated disease and only transplant centers have the knowledge and experience to monitor and care for cirrhotic patients like you. There are transplant centers in Texas and I am hoping someone from Texas will chime in with some contact information.
"A hepatologist is a physician who has obtained special training in liver diseases. All hepatologists are trained in general Internal Medicine (adult medicine). They then undergo special training at a liver center. Hepatology training is one element of training in Gastroenterology, and all gastroenterologists should have basic skills in the management of liver diseases. However, to ensure the highest level of care for liver diseases it is reasonable to seek physicians who have dedicated themselves to the discipline of Hepatology. These physicians devote 80% or more of their time to the study, treatment and management of liver diseases. Most large cities have one or more hepatologists. Many are affiliated with University based hospitals because of the need for multidisciplinary care by specially trained liver transplant and hepatobiliary surgeons, liver pathologists and special radiology services."
http://www.hepato-site.net/hepatologists.html
Yes i have geno type1. I was also a non-responder to treatment before. My Gastro DR susgested I take new treatment. Is a gastro considerd a hepatologist? Thanks
Hello and welcome to the forum.
I guess in order to respond more accurately to your question it would be helpful to know a little more about you.
I am assuming you are Genotype 1 if you are considering triple med treatment.
You said you treated before but failed treatment. What happened (non responder, partial responder, viral breakthrough, relapse)? Did you ever clear the virus?
Do you have any other medical problems besides Hep C.
Is your doctor a Hepatologist who is affiliated with a large medical/transplant center? If not, you need to find a Hepatologist at a large medical/transplant center before you start treatment. A Hepatologist is the best person to monitor a person who has cirrhosis, especially when on treatment.
The side effects vary from person to person. Some have few side effects and others have more. Some have mild side effects and others have more severe side effects. There is no way to know what your side effects will be until you start treatment. You were on Interferon and Riba in 2005 so you already have an idea of the side efects. The third med can add more side effects or intensify some side effects. Again, not eveyone has bad side effects.
The thing is, if you have cirrhosis you ned to be followed very closely by a Hepatologist. A Hepatologist can monitor your treatment as you go along and can also intervene if there are side effects that need treatment.
The best thing to do would be to find a knowledgeable Hepatologist at a large medical/transplant center and discuss the issue of treating with triple meds with him/her. He/She should be able to tell you all of the pros and cons of treating depending on your individual medical situation.
Best of luck.
I guess in order to respond more accurately to your question it would be helpful to know a little more about you.
I am assuming you are Genotype 1 if you are considering triple med treatment.
You said you treated before but failed treatment. What happened (non responder, partial responder, viral breakthrough, relapse)? Did you ever clear the virus?
Do you have any other medical problems besides Hep C.
Is your doctor a Hepatologist who is affiliated with a large medical/transplant center? If not, you need to find a Hepatologist at a large medical/transplant center before you start treatment. A Hepatologist is the best person to monitor a person who has cirrhosis, especially when on treatment.
The side effects vary from person to person. Some have few side effects and others have more. Some have mild side effects and others have more severe side effects. There is no way to know what your side effects will be until you start treatment. You were on Interferon and Riba in 2005 so you already have an idea of the side efects. The third med can add more side effects or intensify some side effects. Again, not eveyone has bad side effects.
The thing is, if you have cirrhosis you ned to be followed very closely by a Hepatologist. A Hepatologist can monitor your treatment as you go along and can also intervene if there are side effects that need treatment.
The best thing to do would be to find a knowledgeable Hepatologist at a large medical/transplant center and discuss the issue of treating with triple meds with him/her. He/She should be able to tell you all of the pros and cons of treating depending on your individual medical situation.
Best of luck.
Hi and welcome, only a good (Hepatolgist) doctor could answer your question, being 70 is there any other health issues on top of being cirrhotic? While 70 is not to old to treat there are many things to consider, as far as sides go they effect people different.......... Good luck.
Hey ~ welcome to the Forum
There are a few folks on here who have similar experience & circumstances and will provide lots of insight about what to expect. Are you Geno 1a? I was wondering when you had your last biopsy and if you have any other medical conditions that could have an impact. The more detail you provide the more exacting others can be. I hope this works out and you are able to slay this dragon once and for all.
There are a few folks on here who have similar experience & circumstances and will provide lots of insight about what to expect. Are you Geno 1a? I was wondering when you had your last biopsy and if you have any other medical conditions that could have an impact. The more detail you provide the more exacting others can be. I hope this works out and you are able to slay this dragon once and for all.
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