Aa
Is my conditions out of hope for TX?
My latest lab results show:
- liver biopsy : activity at grade 2+, fibrosis at stage 1+. how many grades and stages are there?
- HBV DNA via ultraQuat PCR is 3480 (not sure of its unit) in one test, and 180,000 IU/mL in another test using Quat diluted protocol. in truth, i dont really knwo what it means here. but my Dr.thinks it is quite high. If u would, please help me in better understadnign the numbers.
- HCV Genome subtype 1b: RNA via PCR Quant is 3,200,000 IU/mL.
is it too HIGH and out of hope for treatment? Thanks! SenorD
- liver biopsy : activity at grade 2+, fibrosis at stage 1+. how many grades and stages are there?
- HBV DNA via ultraQuat PCR is 3480 (not sure of its unit) in one test, and 180,000 IU/mL in another test using Quat diluted protocol. in truth, i dont really knwo what it means here. but my Dr.thinks it is quite high. If u would, please help me in better understadnign the numbers.
- HCV Genome subtype 1b: RNA via PCR Quant is 3,200,000 IU/mL.
is it too HIGH and out of hope for treatment? Thanks! SenorD
Hi Debby,
Being a single mom, having 2 kids and working full time while being on Tx is NOT easy. i am most impressed with your courage and determination to beat this beast. How are u doing now, and were u able to get rid of the virus? if i remembered correctly, u have both 1a and 1b, right? i hope u all the best.
I'll get a second opinion, but more likely, i'll take the tx. your tx took 72 wks, is it the norm? and what was your tx protocol? thanks!
the caring and supports here are amazing. i dont feel that i am alone and behind closed door.
SrD
Being a single mom, having 2 kids and working full time while being on Tx is NOT easy. i am most impressed with your courage and determination to beat this beast. How are u doing now, and were u able to get rid of the virus? if i remembered correctly, u have both 1a and 1b, right? i hope u all the best.
I'll get a second opinion, but more likely, i'll take the tx. your tx took 72 wks, is it the norm? and what was your tx protocol? thanks!
the caring and supports here are amazing. i dont feel that i am alone and behind closed door.
SrD
I decided to treat because I hated the fact that I had this disease. Then I had my biopsy and found out I was already at stage 3 so that pretty much put me in the have to treat place.
Also, I had a good family support system and good insurance. I didn't want to wait until possibly I had no insurance or something else could come up to compound it. (I had decided to treat the minute I heard I had it). I have to add that I have two friends who have died of liver failure so...I might be a little prejudiced in the logic that we should try and beat it while we can before it gets too bad but...that is just how my brain sees it.
Pretty much you have to take all of the factors in your life and decide.
DO NOT be afraid to treat because of the side effects - that's just bad thinking. Some never get them badly at all. I had them pretty bad at times and worked during all 72 weeks of treatment. I had to - I didn't want to lose my insurance and am a single mom of two kids.
But it's possible to do it....even if it's not much fun.
If you decide not to treat - make sure you keep on top of your liver enzymes and have a biopsy to make sure your liver doesn't go downhill fast. Just because it takes maybe 20 years to get to stage 2 doesn't mean it takes another 20 to get to stage 4. It can happen in just a few years time.
Good luck SenorD. The best part about having hepc is finding that there are people in here who CARE and will do anything to help you. Just ask away - the more you know about all of this the better off you will be able to make decisions.
Debby
Also, I had a good family support system and good insurance. I didn't want to wait until possibly I had no insurance or something else could come up to compound it. (I had decided to treat the minute I heard I had it). I have to add that I have two friends who have died of liver failure so...I might be a little prejudiced in the logic that we should try and beat it while we can before it gets too bad but...that is just how my brain sees it.
Pretty much you have to take all of the factors in your life and decide.
DO NOT be afraid to treat because of the side effects - that's just bad thinking. Some never get them badly at all. I had them pretty bad at times and worked during all 72 weeks of treatment. I had to - I didn't want to lose my insurance and am a single mom of two kids.
But it's possible to do it....even if it's not much fun.
If you decide not to treat - make sure you keep on top of your liver enzymes and have a biopsy to make sure your liver doesn't go downhill fast. Just because it takes maybe 20 years to get to stage 2 doesn't mean it takes another 20 to get to stage 4. It can happen in just a few years time.
Good luck SenorD. The best part about having hepc is finding that there are people in here who CARE and will do anything to help you. Just ask away - the more you know about all of this the better off you will be able to make decisions.
Debby
Thanks for all the advicesand comments. This is my first experience with the forum discussions. your advices help me better understanding the infections as well as the treatments, but most important of all, i find that you guys are so wonderful in sharing your personal experiences with me.
Regarding the treatment, i'm still not quite sure which factors would make one to decide to go forward with the treatment or vice versa. is it a matter of life or dead? is it because of the side effects? is it because of the protocol's low efficacy? Honestly, i am quite clear.
So if you dont mind, i would like to ask why did u choose the treatment or why didnt you? thanks in advance.
I was diagnosed with both B in 1980 and C in 1995. I am not sure how i got it, but it's more likely i got it at birth, since some of my family members have the same. I postponed the treatment because the efficacy was so low for type 1b, because of the potential bad side effects, and because i just joined a start up company. Like i said, my liver stat hasnt changed, and i do not know if it has any thing to do with my active outdoor lifestyle. FYI, i work out with different sports about 2 hrs/day. i dont smoke or drink; i eat a balance meal of low fat. i only drink milk, juice and water. i am retired for almost 2 yrs now, but when i was working, my job was quite stressful. i wish i can draw some correlations between my lifestyle and my liver stats, but i CAN'T. the only thing i can share with u is that i have lots of energy, and i dont think about my liver that much until recently.
on other thread i posted, someone suggested that I post directly to "Forseegood". since being new with forum discussions, is "Forseegood" a website? someone on this board? and if u would, how do i address this person directly? thanks!
SrD
Regarding the treatment, i'm still not quite sure which factors would make one to decide to go forward with the treatment or vice versa. is it a matter of life or dead? is it because of the side effects? is it because of the protocol's low efficacy? Honestly, i am quite clear.
So if you dont mind, i would like to ask why did u choose the treatment or why didnt you? thanks in advance.
I was diagnosed with both B in 1980 and C in 1995. I am not sure how i got it, but it's more likely i got it at birth, since some of my family members have the same. I postponed the treatment because the efficacy was so low for type 1b, because of the potential bad side effects, and because i just joined a start up company. Like i said, my liver stat hasnt changed, and i do not know if it has any thing to do with my active outdoor lifestyle. FYI, i work out with different sports about 2 hrs/day. i dont smoke or drink; i eat a balance meal of low fat. i only drink milk, juice and water. i am retired for almost 2 yrs now, but when i was working, my job was quite stressful. i wish i can draw some correlations between my lifestyle and my liver stats, but i CAN'T. the only thing i can share with u is that i have lots of energy, and i dont think about my liver that much until recently.
on other thread i posted, someone suggested that I post directly to "Forseegood". since being new with forum discussions, is "Forseegood" a website? someone on this board? and if u would, how do i address this person directly? thanks!
SrD
no you are not out of hope.
if you have 2 types, this would be more reason to treat, as having 2 viruses at the same time is doubly hard on the liver. So you'd want to think sooner rather than waiting for better drugs I would think.
I'm not familiar with the E mutating, but the bottom line is, what you have now determines what you do...not what it was at birth, etc.
years ago this disease didn't have much hope, but now many are being cured and many more are also reversing their stage of illness and fibrosis. The liver replaces every cell in it in 1 1/2 years so if you take care of it with diet/no drinking/pot smoking/preventative restorative elements you can help your recovery.
However, treating and killing the virus stops the damage from continuing to be done, and so while it has risks, most choose to try to halt the virus's progress not only to halt the liver damage but also because the virus itself becomes debillitating and strips one of ones energy, mental powers, and more.
do some readin up in here and elsewhere so you can make an informed decision.
maryB
if you have 2 types, this would be more reason to treat, as having 2 viruses at the same time is doubly hard on the liver. So you'd want to think sooner rather than waiting for better drugs I would think.
I'm not familiar with the E mutating, but the bottom line is, what you have now determines what you do...not what it was at birth, etc.
years ago this disease didn't have much hope, but now many are being cured and many more are also reversing their stage of illness and fibrosis. The liver replaces every cell in it in 1 1/2 years so if you take care of it with diet/no drinking/pot smoking/preventative restorative elements you can help your recovery.
However, treating and killing the virus stops the damage from continuing to be done, and so while it has risks, most choose to try to halt the virus's progress not only to halt the liver damage but also because the virus itself becomes debillitating and strips one of ones energy, mental powers, and more.
do some readin up in here and elsewhere so you can make an informed decision.
maryB
The info below comes from www.HCVAdvocate.org. Hope you find it useful.
http://www.hcvadvocate.org/hepatitis/factsheets_pdf/grade_stage.pdf.
You may also find this link on HBV usefull. http://www.hbvadvocate.org
Not unsurprisingly a lot of what they say is the same.
The grade gives an indication of the activity or amount of inflammation and the stage represents the amount of fibrosis or scarring.
The grade is assigned a number based on the degree of inflammation, which is usually scored from 0-4 with 0 being no activity and 3 or 4 considered severe activity. The amount of inflammation is important because it is considered a precursor to fibrosis.
The fibrosis score is also assigned a number from 0-4:
0 = no scarring
1 = minimal scarring
2 = scarring has occurred and extends outside the areas in the liver that contains blood vessels
3=bridging fibrosis is spreading and connecting to other areas that contain fibrosis
4=cirrhosis or advanced scarring of the liver
From http://www.hbvadvocate.org/hepatitis/hepB/HBV%20Information%20Booklet_2006.htm
Inflammation — an immune response to infection or injury characterized by infiltration of white blood cells, swelling, and functional impairment of liver cells. People with liver inflammation may—but do not always—have elevated liver enzyme levels.
Necrosis — the death of liver cells (hepatocytes).
Fibrosis — the development of scar tissue within the liver which, if extensive, may begin to interfere with the smooth flow of blood through the liver.
Cirrhosis — a process in which liver cells are destroyed and replaced with scar tissue. Extensive scar formation can impair the flow of blood through the liver. Compensated cirrhosis is when the liver is scarred but can still work relatively normally; people with compensated cirrhosis usually exhibit few symptoms. Decompensated cirrhosis is when the liver is so damaged that it cannot function properly. People with decompensated cirrhosis may develop complications such as bleeding varices (ruptured blood vessels in the esophagus and stomach), abdominal fluid accumulation (ascites), easy bleeding or bruising, mental impairment (hepatic encephalopathy), and coma.
Hepatocellular carcinoma — a type of liver cancer that may occur in people with chronic hepatitis. Liver cancer typically occurs in people with cirrhosis, but some individuals with hepatitis B who develop liver cancer do not have cirrhosis
HepB Antibody Tests
Unlike hepatitis C, which is diagnosed based on the presence or absence of HCV antibodies, hepatitis B is diagnosed and staged by looking at a complex combination of HBV antigens and antibodies. Tests are available to measure three HBV-associated antigens: HBsAg (surface), HBcAg (core), and HBeAg. The immune system produces three corresponding antibodies: anti-HBs, anti-HBc, and anti-HBe. The presence of HBsAg in the blood indicates that a person currently has hepatitis B. The presence of anti-HBs antibodies in the absence of HBsAg shows that a person has been infected with HBV but no longer has active disease. People with natural immunity to HBV test positive for both anti-HBs and anti-HBc antibodies; people who have received the HBV vaccine have anti-HBs antibodies but not anti-HBc antibodies
The presence of HBeAg indicates that the virus is actively replicating and that a person is highly infectious and at greater risk for liver damage. Traditionally, the loss of HBeAg has been used as an indication that treatment is effective. Increasingly, however, cases are being seen in which people have active disease despite having no evidence of HBeAg. This is due to the emergence of “precore” mutants of HBV, which are unable to produce the “e” antigen. This type of HBV is still uncommon in the U.S., but is prevalent in Asia and the Mediterranean. People with HBeAg-negative chronic active hepatitis tend to be older, and this type of HBV appears to be more difficult to treat.
Viral Load Tests
Viral load tests measure the amount of HBV DNA (genetic material) circulating in the blood. A detectable viral load indicates that HBV is actively replicating. The more sensitive PCR assay can measure lower levels of HBV DNA than the less sensitive bDNA test. Many experts prefer a less sensitive viral load test because the more sensitive tests may encourage doctors to treat asymptomatic carriers who do not need therapy. In people with abnormal liver enzyme levels, higher HBV DNA viral load appears to be associated with more severe liver disease. Viral load tests are also useful as an indication of how well antiviral treatment is working
CS
http://www.hcvadvocate.org/hepatitis/factsheets_pdf/grade_stage.pdf.
You may also find this link on HBV usefull. http://www.hbvadvocate.org
Not unsurprisingly a lot of what they say is the same.
The grade gives an indication of the activity or amount of inflammation and the stage represents the amount of fibrosis or scarring.
The grade is assigned a number based on the degree of inflammation, which is usually scored from 0-4 with 0 being no activity and 3 or 4 considered severe activity. The amount of inflammation is important because it is considered a precursor to fibrosis.
The fibrosis score is also assigned a number from 0-4:
0 = no scarring
1 = minimal scarring
2 = scarring has occurred and extends outside the areas in the liver that contains blood vessels
3=bridging fibrosis is spreading and connecting to other areas that contain fibrosis
4=cirrhosis or advanced scarring of the liver
From http://www.hbvadvocate.org/hepatitis/hepB/HBV%20Information%20Booklet_2006.htm
Inflammation — an immune response to infection or injury characterized by infiltration of white blood cells, swelling, and functional impairment of liver cells. People with liver inflammation may—but do not always—have elevated liver enzyme levels.
Necrosis — the death of liver cells (hepatocytes).
Fibrosis — the development of scar tissue within the liver which, if extensive, may begin to interfere with the smooth flow of blood through the liver.
Cirrhosis — a process in which liver cells are destroyed and replaced with scar tissue. Extensive scar formation can impair the flow of blood through the liver. Compensated cirrhosis is when the liver is scarred but can still work relatively normally; people with compensated cirrhosis usually exhibit few symptoms. Decompensated cirrhosis is when the liver is so damaged that it cannot function properly. People with decompensated cirrhosis may develop complications such as bleeding varices (ruptured blood vessels in the esophagus and stomach), abdominal fluid accumulation (ascites), easy bleeding or bruising, mental impairment (hepatic encephalopathy), and coma.
Hepatocellular carcinoma — a type of liver cancer that may occur in people with chronic hepatitis. Liver cancer typically occurs in people with cirrhosis, but some individuals with hepatitis B who develop liver cancer do not have cirrhosis
HepB Antibody Tests
Unlike hepatitis C, which is diagnosed based on the presence or absence of HCV antibodies, hepatitis B is diagnosed and staged by looking at a complex combination of HBV antigens and antibodies. Tests are available to measure three HBV-associated antigens: HBsAg (surface), HBcAg (core), and HBeAg. The immune system produces three corresponding antibodies: anti-HBs, anti-HBc, and anti-HBe. The presence of HBsAg in the blood indicates that a person currently has hepatitis B. The presence of anti-HBs antibodies in the absence of HBsAg shows that a person has been infected with HBV but no longer has active disease. People with natural immunity to HBV test positive for both anti-HBs and anti-HBc antibodies; people who have received the HBV vaccine have anti-HBs antibodies but not anti-HBc antibodies
The presence of HBeAg indicates that the virus is actively replicating and that a person is highly infectious and at greater risk for liver damage. Traditionally, the loss of HBeAg has been used as an indication that treatment is effective. Increasingly, however, cases are being seen in which people have active disease despite having no evidence of HBeAg. This is due to the emergence of “precore” mutants of HBV, which are unable to produce the “e” antigen. This type of HBV is still uncommon in the U.S., but is prevalent in Asia and the Mediterranean. People with HBeAg-negative chronic active hepatitis tend to be older, and this type of HBV appears to be more difficult to treat.
Viral Load Tests
Viral load tests measure the amount of HBV DNA (genetic material) circulating in the blood. A detectable viral load indicates that HBV is actively replicating. The more sensitive PCR assay can measure lower levels of HBV DNA than the less sensitive bDNA test. Many experts prefer a less sensitive viral load test because the more sensitive tests may encourage doctors to treat asymptomatic carriers who do not need therapy. In people with abnormal liver enzyme levels, higher HBV DNA viral load appears to be associated with more severe liver disease. Viral load tests are also useful as an indication of how well antiviral treatment is working
CS
To me it looks like he is Co-Infected. Has both HepB and HepC.
So you are both right. The biopsy result looks pretty good seeing as having both B & C can cause more damage.
CS
So you are both right. The biopsy result looks pretty good seeing as having both B & C can cause more damage.
CS
Most of us here have hepatitis C. There are only a few of us with hepatitis B. I suggest you open a thread where you put hep B in the title, hopefully it will catch the eye of someone who is knowledgeable about this disease.
If you go over to this website http://janis7hepc.com/ it will help you understand stages and grades and viral load numbers and the basics like that.
Your numbers are not really very high at all and there is no reason you could not be successful. While genotype 1 is the harder to treat there is a 50/50 chance of success...if it were the lotto you'd think those numbers were pretty good at the megamillions right?
I had two genotypes and treatead for 72 weeks and I succeeded just fine and am post treatment 11 months and "cured".
Good luck.
Your numbers are not really very high at all and there is no reason you could not be successful. While genotype 1 is the harder to treat there is a 50/50 chance of success...if it were the lotto you'd think those numbers were pretty good at the megamillions right?
I had two genotypes and treatead for 72 weeks and I succeeded just fine and am post treatment 11 months and "cured".
Good luck.
You are not out of protocol for therapy. There are 4 or 5 (some folks call the initial stage of everyone w/ no viral load stage 0) of fibrosis. I did the clinical trial for HCV at Mayo - 5 million units injected every other day and ribavarin daily. That was 12 yeas ago. At one point my Doc said she couldnt give me three days.... I am here and lovin' it.
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