Aa
Short Intro and a long ESLD question
Hello All:
I've been lurking on this site for some time now and have just joined up bec I suspect I'm going to be in need of the support this wonderful community offers each other.
A little background:
Pink-slipped after 9/11, physical while still covered by insc revealed elevated enzyme levels, then biopsy
diagnosed me as HCv (type1) positive. Did 24 weeks combo-therapy until Aug2002, which left me non-SVR and a wreck. During tx, i did ****** diet (carrot juice, coffee enemas...) but stopped by end of 2002.
Since then, booze-free, diet/nutrition conscious, mostly organic, on suppliments (like milk-thistle), still a smoker though. I have blood-work done twice/year - nothing remarkable; also at times: CTscan, ultrasound, MRI, ....
Last month had checkup. Asked GastroEnt to posit where I was and he suggested perhaps between stage3 and stage4; orderd first full blood-panel in 10 years, informed me of FDA approved triple-tx and suggested I do it.
After a bit of Q-n-A, we established that I'd be putting self through a 12-to-24 week grinder on a 50/50 bet.;
which he felt was worth it.
Now, I know this forum is a place for fighters, not quiters. I haven't lost hope and want the council of fighters.
But I also want to be realistic and if/when I'm at ESLD, get a handle on how much time I have left
I have some lower-rightside tenderness (near pelvis - a pinched feeling) but no swelling, pains
or PHTension, and dont think i'm symptomatic for varices, jaundice; I'll know more in Feb w/endoscopy test.
I may not be at ESLD now, but also may not be far off. The panel results are not remarkably different from
2002, but I also know levels are no indicator of activity.
So I did some more research on INCIVEK and triple-therapy (this great site, wikipedia, livestrong,revolutionhealth, hcvets,...) and found out that for my genotype SVR is still more or less improbable. F3/F4 fibrosis lowers success rates from 78 to 62 percent. Any detectable HCV RNA at Week 4 reduces that number to 54%, but suggests sticking out the 24 weeks anyway; despite also knowing that Prior Response Status cuts success at 24 weeks down to 14%.
I don't want to get too hung up on numbers, but I'm sarting to conclude that my real odds of SVR after 1 year tx are about 1in10; with the first 24 being a 50/50 stab in the dark. Factoring in the added risk of increasing liver damage in 3x-therapy makes me wonder if I should put my sorry bod through it again.
I read here that a liver transplant usually only buys some time if the virus is still present as it will re-infect.
So, my question is whether I'm at ESLD now, or nearing that stage, how long (approx) does one have
until liver failure? If I go gentle on my body, low-stress, good diet, etc... Is it less than 1 year, a few years,
more ??? I realize I'm looking for a difficult answer; specially when so much is un-quantifiable.
I was hoping that I could put off tx two years; until i hit 62 and can 'retire'. This would give me a little bit
of a $ cushion, bec I'm pretty sure (based on previous xperience) that tx and the sx will keep me from working fulltime (if much at all); since last time around was a ***** and now i'm 10yrs further in and the new cocktail is harsher.
Any input is very appreciated, Kudos to all who are tackling this nasty condition. My wife and I celebrate
something called "inner christmas" . This year introduces thoughts on "the mystery of reciprocity".
I see a lot of that here and wish you all the best during solstice and these holidays.
Peace
I've been lurking on this site for some time now and have just joined up bec I suspect I'm going to be in need of the support this wonderful community offers each other.
A little background:
Pink-slipped after 9/11, physical while still covered by insc revealed elevated enzyme levels, then biopsy
diagnosed me as HCv (type1) positive. Did 24 weeks combo-therapy until Aug2002, which left me non-SVR and a wreck. During tx, i did ****** diet (carrot juice, coffee enemas...) but stopped by end of 2002.
Since then, booze-free, diet/nutrition conscious, mostly organic, on suppliments (like milk-thistle), still a smoker though. I have blood-work done twice/year - nothing remarkable; also at times: CTscan, ultrasound, MRI, ....
Last month had checkup. Asked GastroEnt to posit where I was and he suggested perhaps between stage3 and stage4; orderd first full blood-panel in 10 years, informed me of FDA approved triple-tx and suggested I do it.
After a bit of Q-n-A, we established that I'd be putting self through a 12-to-24 week grinder on a 50/50 bet.;
which he felt was worth it.
Now, I know this forum is a place for fighters, not quiters. I haven't lost hope and want the council of fighters.
But I also want to be realistic and if/when I'm at ESLD, get a handle on how much time I have left
I have some lower-rightside tenderness (near pelvis - a pinched feeling) but no swelling, pains
or PHTension, and dont think i'm symptomatic for varices, jaundice; I'll know more in Feb w/endoscopy test.
I may not be at ESLD now, but also may not be far off. The panel results are not remarkably different from
2002, but I also know levels are no indicator of activity.
So I did some more research on INCIVEK and triple-therapy (this great site, wikipedia, livestrong,revolutionhealth, hcvets,...) and found out that for my genotype SVR is still more or less improbable. F3/F4 fibrosis lowers success rates from 78 to 62 percent. Any detectable HCV RNA at Week 4 reduces that number to 54%, but suggests sticking out the 24 weeks anyway; despite also knowing that Prior Response Status cuts success at 24 weeks down to 14%.
I don't want to get too hung up on numbers, but I'm sarting to conclude that my real odds of SVR after 1 year tx are about 1in10; with the first 24 being a 50/50 stab in the dark. Factoring in the added risk of increasing liver damage in 3x-therapy makes me wonder if I should put my sorry bod through it again.
I read here that a liver transplant usually only buys some time if the virus is still present as it will re-infect.
So, my question is whether I'm at ESLD now, or nearing that stage, how long (approx) does one have
until liver failure? If I go gentle on my body, low-stress, good diet, etc... Is it less than 1 year, a few years,
more ??? I realize I'm looking for a difficult answer; specially when so much is un-quantifiable.
I was hoping that I could put off tx two years; until i hit 62 and can 'retire'. This would give me a little bit
of a $ cushion, bec I'm pretty sure (based on previous xperience) that tx and the sx will keep me from working fulltime (if much at all); since last time around was a ***** and now i'm 10yrs further in and the new cocktail is harsher.
Any input is very appreciated, Kudos to all who are tackling this nasty condition. My wife and I celebrate
something called "inner christmas" . This year introduces thoughts on "the mystery of reciprocity".
I see a lot of that here and wish you all the best during solstice and these holidays.
Peace
I think the best one to answer some of your queries is Hector . He is our mentor here and is extremely intelligent in this area. Good luck .
Have you actually had another biopsy yet? Your Dr cant possibly guess at the score. I too was diagnosed in 2001. My biopsy was 2/2. 10 yrs later, I had all kinds of bad feelings about having another biopsy, but my Dr would not treat without it. It came back 1.5/2 I just knew it had gotten worse, when in fact it had not. I also had the same pains you are describing.
If you were a non or null responder to tx last time, you tx will be 48wks.
Don't let all this ruin your holiday season. It may not be as bad as your GI is making you believe. I have a hard time with him suggesting what the results of a biopsy will be. You will usually find more info on here than your Doc will give you. Welcome to the group!!! There are so many knowledgeable people here. Ask questions, you will find lots of answers. Until you know for sure, relax and enjoy the Holiday.
If you were a non or null responder to tx last time, you tx will be 48wks.
Don't let all this ruin your holiday season. It may not be as bad as your GI is making you believe. I have a hard time with him suggesting what the results of a biopsy will be. You will usually find more info on here than your Doc will give you. Welcome to the group!!! There are so many knowledgeable people here. Ask questions, you will find lots of answers. Until you know for sure, relax and enjoy the Holiday.
Yes, Hector will come and give you information taken from research and be nice and logical. But here I am with my history to share.
You seem to have some misinformaiton
If you do not have cirrhosis, you have not gotten to ESLD.
( Stage 4=cirrhosis)
If you are genotype 1, you are the best type to do the triple treatment.
The sooner you do treatment the easier it is on you.
Do not wait until you have decompensated cirrhosis!!!!!!!
Nobody has a crystal ball with the date of death marked on it.
When I was first diagnosed with hep C, I had decompensated cirrhosis. The ascites was what brought me to the doctor.
At that time, it was estimated that I had 5 years.
I did tx. Treatment with decompensated cirhhosis is difficult and rarely successful. I relapsed.
4 1/2 years after my diagnosis I had a transplant.
Not everyone who has hep C and has a transplant must do hep C treatment. According to my hepatologist, some people's new livers seem to resist hcv. However, others, post transplant, develop problems more rapidly than pre-transplant and can have cirrhosis within 5 years.
I began treatment for the 2nd time 2 1/2 years post transplant due to progression of HCV. I'm genotype 2 and doing very well.
When did you last have a biospy? If it hasn't been within the last year, I'd get another one. It is the only way to know exactly how your liver is doing.
Peace, what a great idea!
So far as I know, there is no way to guess at how much or how little liver damage has progressed in 10 years. In my husband's case (age 57), he probably had Hep C, g 1a for 30 years when he was diagnosed in 2007 (fibrosis between 1 - 2). He treated once, with only partial response. When he had his second biopsy in 2010 he had progressed to beginning Cirrhosis. He treated a second time, with only partial response. He is currently treating with one of the triple therapies (Incivek, Peg, and Riba). To my understanding beginning Cirrhosis (f4) is not ESLD. It can progress to ESLD if the Hep C virus continues to damage your liver, but no one knows if/when that may happen. As far as your chances for SVR with the new triple therapies, it sounds like you and your doctor may be underestimating your chances. My understanding is that my husband has about a 59% chance of SVR with the new triple therapy. His viral load was 78 at week 4, UND at week 8, and we are currently awaiting the results of his week 12 labwork. If he remains UND with the 12 week check, he will continue treatment on Peg and Riba for 48 weeks (not 24) because he was a partial responder in the past, didn't have UND at 4 weeks, and has Cirrhosis. My suggestion would be to switch from a Gastroenterologist to a Hepatologist and get a second opinion. My guess is that you are a good candidate to treat now with one of the triple therapies, and, in fact, you probably SHOULD treat now given your age and the increased chances for your liver damage to progress at your age. Of course, I agree with slideman, a liver biopsy will help determine when to treat.
Best wishes,
Advocate1955
Best wishes,
Advocate1955
You could plug in your stats to the Child-Pugh mortality scoring chart if you had Cirrhosis. But if you don't have cirrhosis.....it won't work. Hey, you may never get it. I treated for 88 wks. SOC in 2006....did not clear until wk. 40. so did another 48 for good measure. Relapsed 4 wks after tx.stopped. This time on Gilead Trial 5885, 9451 +SOC, I was clear at 2 wks check. AMAZING!!!!!!! Happy Holidays.
Since you ask some many questions I will only concentrate on the most relevant ones.
“he suggested perhaps between stage3 and stage4; ordered first full blood-panel in 10 years,”
You were treated 10 years ago and had CTscan, ultrasound, MRI but no blood tests or further biopsies? This make no sense. (!) No competent doctor gives a diagnosis of “perhaps between stage 3 and stage 4” if he has nothing to base it on since you haven’t had a biopsy or blood tests in 10 years! “Perhaps” is not a diagnosis.
CTscan, ultrasound, MRI for what? Imaging is for diagnosing abnormalities in the physical structure of the organs or for diagnosing tumors. Tumors are only a high risk in patients that have cirrhosis. Otherwise there is no point to having a $4,500 MRI. Besides if you have cirrhosis it will show up in all these tests. So your doctor should know if you have cirrhosis or not. Not “perhaps between stage3 and stage4”.
If what you are saying is true you need to get a new doctor who is experienced in diagnosing and treating hepatitis C. This person does not understand the basics of hepatitis C or liver disease.
Further evidence that you doctor doesn’t understand the basics of treatment. If and I say if you have cirrhosis you need to treat for about a year. Not 12 or 24 weeks. “a 50/50” chance? Based on guess work? You don’t even know how advanced your liver disease is. But since you have no real diagnosis… who can say how long you need to treat. First, you need a biopsy to find out how advanced your liver disease is.
Get a copy of all your records and …
FIND A DOCTOR WHO TREATS PATIENTS WITH HEPATITIS C.
A specialist (gastroenterologist or hepatologist) preferably at a large hospital.
Then all your questions will be answered.
“But I also want to be realistic and if/when I'm at ESLD, get a handle on how much time I have left.”
If you had ESLD you would know it.
No one can say how much time you have left. There is no crystal ball. We don’t even know if you even have advanced fibrosis or cirrhosis so first things first. Get a real diagnosis then deal with the real situation.
“I have some lower-rightside tenderness (near pelvis - a pinched feeling) but no swelling, pains or PHTension, and dont think i'm symptomatic for varices, jaundice; I'll know more in Feb w/endoscopy test.”
Your liver is located in your chest behind your rib cage on the right, between your nipple and the bottom of your rib cage, NOT near your pelvis. So whatever pain you are having is not liver related. Secondly, a patient will only feel pain in their live area when they are close to death.
“So I did some more research on INCIVEK…”
FIND A DOCTOR WHO TREATS PATIENTS WITH HEPATITIS C AND LIVER DISEASE.
Forget all the statistics until you get a real diagnosis. You are “putting the cart before the horse”.
“I read here that a liver transplant usually only buys some time if the virus is still present as it will re-infect.”
FIND A DOCTOR WHO TREATS PATIENTS WITH HEPATITIS C AND LIVER DISEASE.
You are probably a long way from ESLD. You are worrying about something there is no reason to worry about.
Yes, and then post transplant patients treat their hepatitis C after they have had their transplant. So you must treat either before or after as hepatitis C injuries the liver over time.
“So, my question is whether I'm at ESLD now, or nearing that stage, how long (approx) does one have until liver failure?
FIND A DOCTOR WHO TREATS PATIENTS WITH HEPATITIS C AND LIVER DISEASE.
Is your liver disease so advanced that you liver is unable to perform all of its functions? Are you vomiting blood? Is your abdomen so bloated that you look like you are pregnant with twins? Have you gone in a stupor where you don’t know where you are and walk around looking drunk or have you gone into a coma? Is your skin yellow? How many times this year were you hospitalize with life-threatening complications of ESLD? Have you lost your muscle mass? Do you have bruises all over your body because you are bleeding under your skin? These are some of the symptoms that can happen when a person develops End-Stage Liver Diesase.
As you can see, anyone with ESLD knows it. Unlike in precious stages of liver disease which is often asymptomatic. There life has changed dramatically. There can no longer work or socialize like before as the fatigue is disabling.
If I go gentle on my body, low-stress, good diet, etc... Is it less than 1 year, a few years,
more ???
Being gentle on you r body has nothing to do with the progression of liver disease as long as you are not ingesting toxic substances such as alcohol and certain medicines. The hepatitis C virus is injuring you liver every day as it replicates and the immune system creates fibrosis to protect itself from further injury. As I said there is no crystal ball for how any individual’s liver disease progresses over time.
But your liver disease stage is all guess work. First you need a proper diagnosis by getting a biopsy and a full blood work up. Then go from there.
“I was hoping that I could put off tx two years; until i hit 62 and can 'retire'. This would give me a little bit of a $ cushion, bec I'm pretty sure (based on previous xperience) that tx and the sx will keep me from working fulltime (if much at all”
If and I mean “if” you have cirrhosis it could be very dangerous to wait 2 years. The longer you wait the worse your liver disease the less chance of curing your hep C.
And if you should decompensate and develop ESLD you probably will never be able to treat and will need a transplant to continue living. Of course again all this depends of the current status of your liver disease.
FIND A DOCTOR WHO TREATS PATIENTS WITH HEPATITIS C AND LIVER DISEASE.
Find a gastro or hepatologist at a local hospital that is experienced diagnosing and treating hepatitis C ASAP. Get away from your current doctor as he/she has played Russian Roulette with your life by not monitoring your liver disease over the last ten years (as you have aged and liver disease progresses more quickly). Then and only then will you know where you stand and then can make decisions based on reality not guess work. Then we can help you.
Good luck.
Hector
“he suggested perhaps between stage3 and stage4; ordered first full blood-panel in 10 years,”
You were treated 10 years ago and had CTscan, ultrasound, MRI but no blood tests or further biopsies? This make no sense. (!) No competent doctor gives a diagnosis of “perhaps between stage 3 and stage 4” if he has nothing to base it on since you haven’t had a biopsy or blood tests in 10 years! “Perhaps” is not a diagnosis.
CTscan, ultrasound, MRI for what? Imaging is for diagnosing abnormalities in the physical structure of the organs or for diagnosing tumors. Tumors are only a high risk in patients that have cirrhosis. Otherwise there is no point to having a $4,500 MRI. Besides if you have cirrhosis it will show up in all these tests. So your doctor should know if you have cirrhosis or not. Not “perhaps between stage3 and stage4”.
If what you are saying is true you need to get a new doctor who is experienced in diagnosing and treating hepatitis C. This person does not understand the basics of hepatitis C or liver disease.
Further evidence that you doctor doesn’t understand the basics of treatment. If and I say if you have cirrhosis you need to treat for about a year. Not 12 or 24 weeks. “a 50/50” chance? Based on guess work? You don’t even know how advanced your liver disease is. But since you have no real diagnosis… who can say how long you need to treat. First, you need a biopsy to find out how advanced your liver disease is.
Get a copy of all your records and …
FIND A DOCTOR WHO TREATS PATIENTS WITH HEPATITIS C.
A specialist (gastroenterologist or hepatologist) preferably at a large hospital.
Then all your questions will be answered.
“But I also want to be realistic and if/when I'm at ESLD, get a handle on how much time I have left.”
If you had ESLD you would know it.
No one can say how much time you have left. There is no crystal ball. We don’t even know if you even have advanced fibrosis or cirrhosis so first things first. Get a real diagnosis then deal with the real situation.
“I have some lower-rightside tenderness (near pelvis - a pinched feeling) but no swelling, pains or PHTension, and dont think i'm symptomatic for varices, jaundice; I'll know more in Feb w/endoscopy test.”
Your liver is located in your chest behind your rib cage on the right, between your nipple and the bottom of your rib cage, NOT near your pelvis. So whatever pain you are having is not liver related. Secondly, a patient will only feel pain in their live area when they are close to death.
“So I did some more research on INCIVEK…”
FIND A DOCTOR WHO TREATS PATIENTS WITH HEPATITIS C AND LIVER DISEASE.
Forget all the statistics until you get a real diagnosis. You are “putting the cart before the horse”.
“I read here that a liver transplant usually only buys some time if the virus is still present as it will re-infect.”
FIND A DOCTOR WHO TREATS PATIENTS WITH HEPATITIS C AND LIVER DISEASE.
You are probably a long way from ESLD. You are worrying about something there is no reason to worry about.
Yes, and then post transplant patients treat their hepatitis C after they have had their transplant. So you must treat either before or after as hepatitis C injuries the liver over time.
“So, my question is whether I'm at ESLD now, or nearing that stage, how long (approx) does one have until liver failure?
FIND A DOCTOR WHO TREATS PATIENTS WITH HEPATITIS C AND LIVER DISEASE.
Is your liver disease so advanced that you liver is unable to perform all of its functions? Are you vomiting blood? Is your abdomen so bloated that you look like you are pregnant with twins? Have you gone in a stupor where you don’t know where you are and walk around looking drunk or have you gone into a coma? Is your skin yellow? How many times this year were you hospitalize with life-threatening complications of ESLD? Have you lost your muscle mass? Do you have bruises all over your body because you are bleeding under your skin? These are some of the symptoms that can happen when a person develops End-Stage Liver Diesase.
As you can see, anyone with ESLD knows it. Unlike in precious stages of liver disease which is often asymptomatic. There life has changed dramatically. There can no longer work or socialize like before as the fatigue is disabling.
If I go gentle on my body, low-stress, good diet, etc... Is it less than 1 year, a few years,
more ???
Being gentle on you r body has nothing to do with the progression of liver disease as long as you are not ingesting toxic substances such as alcohol and certain medicines. The hepatitis C virus is injuring you liver every day as it replicates and the immune system creates fibrosis to protect itself from further injury. As I said there is no crystal ball for how any individual’s liver disease progresses over time.
But your liver disease stage is all guess work. First you need a proper diagnosis by getting a biopsy and a full blood work up. Then go from there.
“I was hoping that I could put off tx two years; until i hit 62 and can 'retire'. This would give me a little bit of a $ cushion, bec I'm pretty sure (based on previous xperience) that tx and the sx will keep me from working fulltime (if much at all”
If and I mean “if” you have cirrhosis it could be very dangerous to wait 2 years. The longer you wait the worse your liver disease the less chance of curing your hep C.
And if you should decompensate and develop ESLD you probably will never be able to treat and will need a transplant to continue living. Of course again all this depends of the current status of your liver disease.
FIND A DOCTOR WHO TREATS PATIENTS WITH HEPATITIS C AND LIVER DISEASE.
Find a gastro or hepatologist at a local hospital that is experienced diagnosing and treating hepatitis C ASAP. Get away from your current doctor as he/she has played Russian Roulette with your life by not monitoring your liver disease over the last ten years (as you have aged and liver disease progresses more quickly). Then and only then will you know where you stand and then can make decisions based on reality not guess work. Then we can help you.
Good luck.
Hector
Hey koko, welcome. As was mentioned above, I would get a hepatolgist and possibly get another biopsy which I understand to be the gold standard of a diagnosed liver to find out where you really stand as far as your grade and stage damage. Also find out what genotype you are, the two new medications that are triple therapy are only approved for use on people who have G1a and G1b, although you can treat with Peg/Rv. I myself am Grade 2 Stage 4 cirrhosis,dx in 2009, and am waiting to get approval for Victrelis, I'm what you call "compensated liver".
Regards
Charlie
Regards
Charlie
Why did you only do 24 weeks the first time? When or did you ever reach UND? Were you compliant? You said tx left you a wreck. Well, be advised that adding another medicine to the mix does not make it easier. You mentioned 12-24 weeks. That is wrong. With the PIs you are looking at 24-48 weeks. If you have cirrhosis which you won't know unless you get a biopsy, you will have to do the 48 weeks regardless of your success.
You sound like you are nonsymptomatic. Even if you are stage 3-4 which is what my biopsy reflected, you are a long way from ESLD unless you are showing symptoms.
It sounds like your questions is, how long can you get away without treating. It sounds like you are in a bind -- maybe until you can get on medicare. You said you have a 50/50 chance with the new PI's. I think I need some more information to determine that -- it sounds too low, but it depends on whether you are a nonresponder, relapser, or had a break though.
You sound like you are nonsymptomatic. Even if you are stage 3-4 which is what my biopsy reflected, you are a long way from ESLD unless you are showing symptoms.
It sounds like your questions is, how long can you get away without treating. It sounds like you are in a bind -- maybe until you can get on medicare. You said you have a 50/50 chance with the new PI's. I think I need some more information to determine that -- it sounds too low, but it depends on whether you are a nonresponder, relapser, or had a break though.
Hi and thanks printze (and all) for responding:
Good point; yes I'm due for another biopsy; and you're absolutely correct that a biop is the only real evidence.
I havent heard from my GI yet, but am curious about what he'll report. I know I'm showing some symptions (fatigue, poor digestion, etc...) but nothing like black stool or bloody urine.
Also, I just started wellbutrin 6 weeks ago and dont know if that factors; for depression but also to quit smoking.
Yes, "how long w/out treating" if that really is pragmatically my best/only choice. 50/50 at 24 weeks meaning a) its all or nothing and b) type1 and non-responding in 2002 reduces my chances of going from 25-48 weeks.
Thanks again
Good point; yes I'm due for another biopsy; and you're absolutely correct that a biop is the only real evidence.
I havent heard from my GI yet, but am curious about what he'll report. I know I'm showing some symptions (fatigue, poor digestion, etc...) but nothing like black stool or bloody urine.
Also, I just started wellbutrin 6 weeks ago and dont know if that factors; for depression but also to quit smoking.
Yes, "how long w/out treating" if that really is pragmatically my best/only choice. 50/50 at 24 weeks meaning a) its all or nothing and b) type1 and non-responding in 2002 reduces my chances of going from 25-48 weeks.
Thanks again
Hi and thanks
My GI is just being frank and corroborating what i've read about 3x therapy. He is advocating i take it ASAP, but realized that I 'could' go 24 weeks for naught and is saying as much.
If you have cirrosis, and bridged scarring, how could your biopsy possibly show an improvement? Not that I'm complaining as if true then my outlook would improve tremendously.
I know i should not jump to conclusions w/out one, but my impression was that my liver would never get better only worse.
As such I thought it natural to believe that after 10 years a biop would only indicate more deterioration.
"If you were a non or null responder to tx last time, you tx will be 48wks. "
My understanding is that a null/non may not even get past 24.
Its based on this:
"Twenty-three percent of INCIVEK-treated subjects had cirrhosis at baseline. SVR rates among cirrhotic subjects who received INCIVEK combination treatment compared to Pbo/PR48 were: 87% (48/55) compared to 13% (2/15) for prior relapsers, 34% (11/32) compared to 20% (1/5) for prior partial responders, and 14% (7/50) compared to 10% (1/10) for prior null responders."
'The following points should be considered when initiating treatment with INCIVEK:
• A high proportion of previous null responders (particularly those with cirrhosis) did not achieve a Sustained Virologic Response (SVR) and had telaprevir resistance-associated substitutions emerge on treatment with INCIVEK combination treatment [see Microbiology (12.4) and Clinical Studies (14.3)]."
SIDE NOTE:
when i did my 2002 tx I felt that even though i never passed the 6 month mark, that by drastically reducing the load during that time I took some stress off my liver and perhaps bought myself a bit more time; despite knowing the load/activity would go back up.
So, another ? i have is if I undergo 3x and blast self with antivirals
even if i don't get past week 24, will my liver be better off for having a substantially reduced load ?? Will that translate to reduced activity for a meaningful length of time?
Thanks again and merry holiday
My GI is just being frank and corroborating what i've read about 3x therapy. He is advocating i take it ASAP, but realized that I 'could' go 24 weeks for naught and is saying as much.
If you have cirrosis, and bridged scarring, how could your biopsy possibly show an improvement? Not that I'm complaining as if true then my outlook would improve tremendously.
I know i should not jump to conclusions w/out one, but my impression was that my liver would never get better only worse.
As such I thought it natural to believe that after 10 years a biop would only indicate more deterioration.
"If you were a non or null responder to tx last time, you tx will be 48wks. "
My understanding is that a null/non may not even get past 24.
Its based on this:
"Twenty-three percent of INCIVEK-treated subjects had cirrhosis at baseline. SVR rates among cirrhotic subjects who received INCIVEK combination treatment compared to Pbo/PR48 were: 87% (48/55) compared to 13% (2/15) for prior relapsers, 34% (11/32) compared to 20% (1/5) for prior partial responders, and 14% (7/50) compared to 10% (1/10) for prior null responders."
'The following points should be considered when initiating treatment with INCIVEK:
• A high proportion of previous null responders (particularly those with cirrhosis) did not achieve a Sustained Virologic Response (SVR) and had telaprevir resistance-associated substitutions emerge on treatment with INCIVEK combination treatment [see Microbiology (12.4) and Clinical Studies (14.3)]."
SIDE NOTE:
when i did my 2002 tx I felt that even though i never passed the 6 month mark, that by drastically reducing the load during that time I took some stress off my liver and perhaps bought myself a bit more time; despite knowing the load/activity would go back up.
So, another ? i have is if I undergo 3x and blast self with antivirals
even if i don't get past week 24, will my liver be better off for having a substantially reduced load ?? Will that translate to reduced activity for a meaningful length of time?
Thanks again and merry holiday
Thank-you for all your insitefull comments! Instead of replying to each, I'm just going to post to all and say that your inputs have clarified my present status a whole lot; its like a xmas present.
First, I think I jumped the gun a bit and apologize for same. I had bloodwork done 4 weeks ago and had not heard from Dr in meantime. Since he's usually prompt, I concluded that he's either
sparing me bad news b4 the holidays or (less likely) there was no immediate need. My Dr. is not estimating (over or under) anything. He actually is saying it holds out hope and suggests I go on it at earliest chance. But, he also wants me to understand both the sx and the probabilities. The math in the original post is all mine; taken from this and other websites; which i can cite and believe is accurate.
Nevertheless, I went to Hosp Records and got the results along with my 2001 results and did side-by-side comparison.
I knew, and appreciate your reminders, that a biopsy (+endoscopy) is waiting for me in the new year and will reveal my present condition.
What spooked me though was my inability to find info on
"Viral Markers" results. Specifically the "Flag" for
HEP C DIAG PROG
HEP C GENOTYPE 1b
HEP C AMP
and ALPHA-FETO,SER C H
I know what the 'H' means, found the AFP interpretation at
http://cclnprod.cc.nih.gov/dlm/testguide.nsf
but got bit by the itch that might mean cancerous
(i know, i know, don't have to say it..)
My bloodwork seemed not too different from 10 years ago, but i mistakenly believed that fibrous bridged-scarring was a form of cirrhosis; and that being degenerative, would only have gotten worse. I don't know how long one can remain in a "Stage" but I knew I was stage 3 when diagnosed.
So, I wrote my original post in order to get a better handle on this in preparation for what I'd hear from my GI, not the other way around. I know what he is going to say: take the tx suffer the sx
Its just a question of when for me as next year is really bad timing.
I'll follow-up with biopsy results when i get them because you all are an invaluable objective resource. Thanks for putting me at ease (to whatever degree is possible) and have a safe and supportive holliday!
SPECIFIC REPLYS FOLLOW:
Orphanedhawk:
Thanks for the clarification and the encouragement. 2x the tx and a x-plant! wow you are a model of strength and I hope I can emulate your fortitude.
Advocate1955:
I think my condition is somewhat similar to your husbands. I prob contracted virus 30+ yrs ago; did combo tx in 2002. I don't think i completely understand the difference between partial, non and null in response, but after 24 weeks went off because my load was substantially above SVR. If you don't mind my asking, how's your hubby doing w/sx at week 8? What level of activity is he able
to maintain?
Thanks for the clarification on f4==cirrhosis! I know i have bridged-scarring, I know I'm well into f3 and my GI (like others here) say accurate determination is difficult; mostly based on clinical observation and comprehensive overview of tests (Chemistry and Liver Panel etc...) Also, thank-you for the hepatologist suggestion. I concur and have been making calls. Its just that i've been with my GI this whole time and i do trust him. But i realize it my body and my decision and 2nd opinions never hurt:)
Hi beyondmwd
Judging from everyone's comments, I guess in all likelihood I'm not yet Cirrhotic, or only entering the Cirrhosis stage Wow, 88 weeks, plus 44 weeks! I guess your perseverance paid off; 'cleared' must be such good news.
Thanks for sharing.
Hi HectorSF :
VERRY SORRY, my post was WAY too non-specific and your opinion of my GI is misplaced. My bad.
I tested positive in fall2001 after biopsy and other tests.
Underwent combo tx until Aug2002 (peg-interferon/ribavirin) - was no SVR so it was discontinued. Between 2002 and 2011 I have have bloodwork 2x annually. No point in complex testing, just the basics (e.g. chemistry panel and liver functions) to monitor enzyme levels etc...
Over the past 10 years i have had ultrasound (2x), CTscan (1x); as for the MRI (2009 i think) i'm not entirely sure why, that year i had an endoscopy done as well (clear).
"If and I say if you have cirrhosis you need to treat for about a year"
Others have said same thing. Can you point me to a reference ?
My take, from the responses, is that i'm prob not into stage 4 yet, my liver is still compensated, and as such i'll assume for now that I don't yet have cirrhosis. Are the results of a biopsy the Grades
for "Portal, Lobular and Fibrosis" ??
FIND A DOCTOR WHO TREATS PATIENTS WITH HEPATITIS C.
My GI is a specialist at a 'medium' sized hospital. Though I'm going to ask him how many others he's treating for HCV AND find a hepatologist; Dartmouth-Hitchcock is just too far away for me to visit regularly.
"Is your liver disease so advanced ...."
Thanks for clearly painting the picture of what ESLD entails.
I (now) know that my concerns are mostly guesswork w/out another biopsy. I believe my dr is pretty competitent, I just 'jumped the gun' i suspect. My GI is a specialist at a 'medium' sized but respectable hospital. Though I'm going to ask him how many
others he's treating for HCV AND find a hepatologist; Dartmouth-Hitchcock is just too far away for me to visit regularly.
Basically you, and everyone else here, are the 'informed' opinion i have; if not to balance my Dr's assessment against, at least to ask
intelligent questions.
frijole:
I was told by dr (and searching) that if not SVR after 6mo the 12mo tx will not have any appreciable effect. Sure, my load will drop but i will not clear. As for sx, yea - so i'm told; the 12-24 is my understanding that the 12weeks including INCIVEK should drop the load sufficiently enough that the PEG/RIBO combo can clear me after 24, or so hoped. The 50/50 was that at 24 weeks i'm either good to go another 24 or it was all for naught. I'll stand happily corrected if i'm wrong on that. But as a prior non-responder, my odds are somewhat reduced.
First, I think I jumped the gun a bit and apologize for same. I had bloodwork done 4 weeks ago and had not heard from Dr in meantime. Since he's usually prompt, I concluded that he's either
sparing me bad news b4 the holidays or (less likely) there was no immediate need. My Dr. is not estimating (over or under) anything. He actually is saying it holds out hope and suggests I go on it at earliest chance. But, he also wants me to understand both the sx and the probabilities. The math in the original post is all mine; taken from this and other websites; which i can cite and believe is accurate.
Nevertheless, I went to Hosp Records and got the results along with my 2001 results and did side-by-side comparison.
I knew, and appreciate your reminders, that a biopsy (+endoscopy) is waiting for me in the new year and will reveal my present condition.
What spooked me though was my inability to find info on
"Viral Markers" results. Specifically the "Flag" for
HEP C DIAG PROG
HEP C GENOTYPE 1b
HEP C AMP
and ALPHA-FETO,SER C H
I know what the 'H' means, found the AFP interpretation at
http://cclnprod.cc.nih.gov/dlm/testguide.nsf
but got bit by the itch that might mean cancerous
(i know, i know, don't have to say it..)
My bloodwork seemed not too different from 10 years ago, but i mistakenly believed that fibrous bridged-scarring was a form of cirrhosis; and that being degenerative, would only have gotten worse. I don't know how long one can remain in a "Stage" but I knew I was stage 3 when diagnosed.
So, I wrote my original post in order to get a better handle on this in preparation for what I'd hear from my GI, not the other way around. I know what he is going to say: take the tx suffer the sx
Its just a question of when for me as next year is really bad timing.
I'll follow-up with biopsy results when i get them because you all are an invaluable objective resource. Thanks for putting me at ease (to whatever degree is possible) and have a safe and supportive holliday!
SPECIFIC REPLYS FOLLOW:
Orphanedhawk:
Thanks for the clarification and the encouragement. 2x the tx and a x-plant! wow you are a model of strength and I hope I can emulate your fortitude.
Advocate1955:
I think my condition is somewhat similar to your husbands. I prob contracted virus 30+ yrs ago; did combo tx in 2002. I don't think i completely understand the difference between partial, non and null in response, but after 24 weeks went off because my load was substantially above SVR. If you don't mind my asking, how's your hubby doing w/sx at week 8? What level of activity is he able
to maintain?
Thanks for the clarification on f4==cirrhosis! I know i have bridged-scarring, I know I'm well into f3 and my GI (like others here) say accurate determination is difficult; mostly based on clinical observation and comprehensive overview of tests (Chemistry and Liver Panel etc...) Also, thank-you for the hepatologist suggestion. I concur and have been making calls. Its just that i've been with my GI this whole time and i do trust him. But i realize it my body and my decision and 2nd opinions never hurt:)
Hi beyondmwd
Judging from everyone's comments, I guess in all likelihood I'm not yet Cirrhotic, or only entering the Cirrhosis stage Wow, 88 weeks, plus 44 weeks! I guess your perseverance paid off; 'cleared' must be such good news.
Thanks for sharing.
Hi HectorSF :
VERRY SORRY, my post was WAY too non-specific and your opinion of my GI is misplaced. My bad.
I tested positive in fall2001 after biopsy and other tests.
Underwent combo tx until Aug2002 (peg-interferon/ribavirin) - was no SVR so it was discontinued. Between 2002 and 2011 I have have bloodwork 2x annually. No point in complex testing, just the basics (e.g. chemistry panel and liver functions) to monitor enzyme levels etc...
Over the past 10 years i have had ultrasound (2x), CTscan (1x); as for the MRI (2009 i think) i'm not entirely sure why, that year i had an endoscopy done as well (clear).
"If and I say if you have cirrhosis you need to treat for about a year"
Others have said same thing. Can you point me to a reference ?
My take, from the responses, is that i'm prob not into stage 4 yet, my liver is still compensated, and as such i'll assume for now that I don't yet have cirrhosis. Are the results of a biopsy the Grades
for "Portal, Lobular and Fibrosis" ??
FIND A DOCTOR WHO TREATS PATIENTS WITH HEPATITIS C.
My GI is a specialist at a 'medium' sized hospital. Though I'm going to ask him how many others he's treating for HCV AND find a hepatologist; Dartmouth-Hitchcock is just too far away for me to visit regularly.
"Is your liver disease so advanced ...."
Thanks for clearly painting the picture of what ESLD entails.
I (now) know that my concerns are mostly guesswork w/out another biopsy. I believe my dr is pretty competitent, I just 'jumped the gun' i suspect. My GI is a specialist at a 'medium' sized but respectable hospital. Though I'm going to ask him how many
others he's treating for HCV AND find a hepatologist; Dartmouth-Hitchcock is just too far away for me to visit regularly.
Basically you, and everyone else here, are the 'informed' opinion i have; if not to balance my Dr's assessment against, at least to ask
intelligent questions.
frijole:
I was told by dr (and searching) that if not SVR after 6mo the 12mo tx will not have any appreciable effect. Sure, my load will drop but i will not clear. As for sx, yea - so i'm told; the 12-24 is my understanding that the 12weeks including INCIVEK should drop the load sufficiently enough that the PEG/RIBO combo can clear me after 24, or so hoped. The 50/50 was that at 24 weeks i'm either good to go another 24 or it was all for naught. I'll stand happily corrected if i'm wrong on that. But as a prior non-responder, my odds are somewhat reduced.
" Dartmouth-Hitchcock is just too far away for me to visit regularly. " I made the trip up to Dartmouth over 30 times during my treatment (72 weeks). SVR, well worth the trip (2 hrs each way) - top notch is an understatement. I highly suggest you get an appointment with Dr. Brian Berk in the gastro/hep dept.
Best of luck
pro
Best of luck
pro
PS: once you get settled into the routine, it's a once a month visit to Dart., you can have your blood labs done locally and faxed up for tx decisions.
Hi Pro:
Thanks for the name and your story. I'd be traveling south, but you've got a point that's well worth considering.
Thanks for the name and your story. I'd be traveling south, but you've got a point that's well worth considering.
"Over the past 10 years i have had ultrasound (2x), CTscan (1x); as for the MRI (2009 i think) i'm not entirely sure why, that year i had an endoscopy done as well (clear)."
Depending on how recent the tests were, any of the imaging test would tell you if you have cirrhosis. So I don't understand why you don't know if you have stage 4 cirrhosis or not? And if not why did you asked so many questions about ESLD and cirrhosis and wonder how much time you have?
"my liver is still compensated, and as such i'll assume for now that I don't yet have cirrhosis."
"Compensated is a stage of cirrhosis. It is early cirrhosis before decompensation otherwise known as ESLD. You miss understand the term. The term is used to differentiate different stages of cirrhosis.
"Are the results of a biopsy the Grades for "Portal, Lobular and Fibrosis" ?? ". The stages from by a biopsy are the stages of fibrosis of the liver. Portal and lobular are totally different terms that have nothing to due with staging the liver.
" My GI is a specialist at a 'medium' sized but respectable hospital."
Does he specialize in hepatitis or liver disease? A GI is a specialist of the digestive system, not necessarily of hepatitis or liver disease. A hepatologist is a liver specialist. Your doctor may be an expert in hepatitis or liver disease but if his patients don't know if they are cirrhotic or not that indicated that he doesn't know how to communicate with patients.Degree means everything with liver disease. A person with stage 0 and a person with ESLD are the difference between a generally healthy person and a person who's liver is failing and will let to death in time if they don't have a transplant.
Please educate yourself about hepatitis C and liver disease as you are not understanding the true nature of your illness and confusing yourself with a lot of unfounded speculation and jumping to unrealistic conclusions.
Good luck finding a doctor who will be able to help you.
Hector
Depending on how recent the tests were, any of the imaging test would tell you if you have cirrhosis. So I don't understand why you don't know if you have stage 4 cirrhosis or not? And if not why did you asked so many questions about ESLD and cirrhosis and wonder how much time you have?
"my liver is still compensated, and as such i'll assume for now that I don't yet have cirrhosis."
"Compensated is a stage of cirrhosis. It is early cirrhosis before decompensation otherwise known as ESLD. You miss understand the term. The term is used to differentiate different stages of cirrhosis.
"Are the results of a biopsy the Grades for "Portal, Lobular and Fibrosis" ?? ". The stages from by a biopsy are the stages of fibrosis of the liver. Portal and lobular are totally different terms that have nothing to due with staging the liver.
" My GI is a specialist at a 'medium' sized but respectable hospital."
Does he specialize in hepatitis or liver disease? A GI is a specialist of the digestive system, not necessarily of hepatitis or liver disease. A hepatologist is a liver specialist. Your doctor may be an expert in hepatitis or liver disease but if his patients don't know if they are cirrhotic or not that indicated that he doesn't know how to communicate with patients.Degree means everything with liver disease. A person with stage 0 and a person with ESLD are the difference between a generally healthy person and a person who's liver is failing and will let to death in time if they don't have a transplant.
Please educate yourself about hepatitis C and liver disease as you are not understanding the true nature of your illness and confusing yourself with a lot of unfounded speculation and jumping to unrealistic conclusions.
Good luck finding a doctor who will be able to help you.
Hector
As my doctor a long time ago told me, "go live your life"
It may sound simplistic, but you have today.
I have been at stage 4 for the 10 years since I have been diagnosed. No worse, but to me, better because I know that I have today. Everything after today is not in my power to decide. But you can still take care of your body and soul for the future. My daily regimen: diet,exercise, and prayer.
God told me that no matter what happens, everything will be OK. He didn't say that I won't progress to ESLD, that I won't rupture a varices and bleed out, that I won't get HCC. He only said everything will be OK. So everyday I turn my will and my life over to Him and I am good for that day.
Works for me and I have never been happier in my life and the best thing is is that it rubs off on the people around me.
So my advice? Learn from yesterday, plan for tomorrow, live for today. And oh yeah, listen to Hector!!!
And have a Merry Christmas - it is tomorrow and the start of a new day!
Chris
It may sound simplistic, but you have today.
I have been at stage 4 for the 10 years since I have been diagnosed. No worse, but to me, better because I know that I have today. Everything after today is not in my power to decide. But you can still take care of your body and soul for the future. My daily regimen: diet,exercise, and prayer.
God told me that no matter what happens, everything will be OK. He didn't say that I won't progress to ESLD, that I won't rupture a varices and bleed out, that I won't get HCC. He only said everything will be OK. So everyday I turn my will and my life over to Him and I am good for that day.
Works for me and I have never been happier in my life and the best thing is is that it rubs off on the people around me.
So my advice? Learn from yesterday, plan for tomorrow, live for today. And oh yeah, listen to Hector!!!
And have a Merry Christmas - it is tomorrow and the start of a new day!
Chris
Kokomojo,
With the combination therapy (Interferon and Ribavirin), a patient needed to have a 2 log drop in viral load (basically dropping by two zeros at the end of the viral load count) in order to continue treatment. If the patient comes close to the two log drop, but doesn't meet it, they are a partial responder. If the patient responds a little bit or doesn't respond at all, I think they are considered to be non-responders or null responders. My husband was a partial responder to his first two treatments. In both treatments, his viral load dropped but not enough to continue treatment past 12 weeks. The viral load goes up and down at any given time, and may go down during treatment, even a failed treatment, but then may rise again right away, because the virus is still present in the blood.
The first treatment in 2007 with Interferon and Ribavirin was difficult, but manageable. He did not miss any days of work. The second treatment in 2010 with daily Infergen injections and an increased dose of Ribavirin was very difficult, but manageable with prescriptions for side effects. He missed 1 day of work due to nausea before he got a prescription for an anti nausea med. This third treatment with Incivek, Interferon, and Ribavirin has been difficult, but manageable with prescriptions for side effects. I would say that in comparison to the second treatment, the triple therapy has been less difficult for him so far. The daily injections of Infergen were extremely tough in treatment #2. Right now my husband is in Week 13 of the triple therapy, so he just finished the 12 weeks of Incivek two days ago. During the first 12 weeks, he has missed two days of work (one day due to extreme chills and one day due to symptoms of anemia).
I still don't really understand why you feel you have a 50/50 chance at SVR on triple therapy. I believe that if you find that you do not have cirrhosis, you may have a 75% chance at SVR according to the Incivek trial results. I believe that if you find that you do have cirrhosis, you may have about a 60% chance at SVR according to the trial results. Not sure about Victrellis, but maybe someone else on the forum knows.
Of course you stage of liver damage, age, weight, general health, etc. all have to be factored in.
Overall, my impression is that you don't have time to wait, and you should treat now with one of the triple therapies. If you do not yet have cirrhosis, you have a chance to prevent it by treating. If you do have cirrhosis, you have a chance to stop further damage by treating.
Go forward. With the triple therapies, you have a better chance then ever before to obtain SVR, and you don't have time to wait, in my humble opinion.
Advocate1955
With the combination therapy (Interferon and Ribavirin), a patient needed to have a 2 log drop in viral load (basically dropping by two zeros at the end of the viral load count) in order to continue treatment. If the patient comes close to the two log drop, but doesn't meet it, they are a partial responder. If the patient responds a little bit or doesn't respond at all, I think they are considered to be non-responders or null responders. My husband was a partial responder to his first two treatments. In both treatments, his viral load dropped but not enough to continue treatment past 12 weeks. The viral load goes up and down at any given time, and may go down during treatment, even a failed treatment, but then may rise again right away, because the virus is still present in the blood.
The first treatment in 2007 with Interferon and Ribavirin was difficult, but manageable. He did not miss any days of work. The second treatment in 2010 with daily Infergen injections and an increased dose of Ribavirin was very difficult, but manageable with prescriptions for side effects. He missed 1 day of work due to nausea before he got a prescription for an anti nausea med. This third treatment with Incivek, Interferon, and Ribavirin has been difficult, but manageable with prescriptions for side effects. I would say that in comparison to the second treatment, the triple therapy has been less difficult for him so far. The daily injections of Infergen were extremely tough in treatment #2. Right now my husband is in Week 13 of the triple therapy, so he just finished the 12 weeks of Incivek two days ago. During the first 12 weeks, he has missed two days of work (one day due to extreme chills and one day due to symptoms of anemia).
I still don't really understand why you feel you have a 50/50 chance at SVR on triple therapy. I believe that if you find that you do not have cirrhosis, you may have a 75% chance at SVR according to the Incivek trial results. I believe that if you find that you do have cirrhosis, you may have about a 60% chance at SVR according to the trial results. Not sure about Victrellis, but maybe someone else on the forum knows.
Of course you stage of liver damage, age, weight, general health, etc. all have to be factored in.
Overall, my impression is that you don't have time to wait, and you should treat now with one of the triple therapies. If you do not yet have cirrhosis, you have a chance to prevent it by treating. If you do have cirrhosis, you have a chance to stop further damage by treating.
Go forward. With the triple therapies, you have a better chance then ever before to obtain SVR, and you don't have time to wait, in my humble opinion.
Advocate1955
Smuggler, you have the option to be seen at one of the finest teaching medical centers in the country, why would you settle for anything else?
Merry Christmas. pro
http://patients.dartmouth-hitchcock.org/gi/teamprofile/28803/Brian_S_Berk_MD
Merry Christmas. pro
http://patients.dartmouth-hitchcock.org/gi/teamprofile/28803/Brian_S_Berk_MD
Stop speculating! It will drive you insane. Enjoy your holidays and move forward.
Merry Xmas
Merry Xmas
Hello again to All and thanks again for your informative comments:
As I stated previous, my reasons for writing my post was to get a better handle on whether I had the luxury of time and could hold off tx for 2 years due, mostly, to financial concerns. I would like to sell my house, unload a lot of 'stuff'. Scale down my life so that its more manageable; for me and, more important, for my wife.
My plan was to do this regardless of tx because of economic instability, rising costs, ... For me, 2012 was slated as a time for 'un-burdening', divesting, getting liquid; which alone is a lot of work, job aside. I feel that all of you have provided me with enough insights to ask better questions of the most fitting providers/specialists. Thank-you for that.
I'll come back to post what dr. says, what biopsy reveals, 2nd opinions from a hepatologist when it happens. Until then I'll continue to lurk to stay abreast w/your progress(s)
SPECIFIC REPLYS FOLLOW:
HectorSF:
"Portal and lobular are totally different terms that have nothing to due with staging the liver."
Can you tell me what they reference then:
" A hepatologist is a liver specialist. Your doctor may be an expert in hepatitis or liver disease but if his patients don't know if they are cirrhotic or not that indicated that he doesn't know how to communicate with patients."
Agreed, my dr. is prob not a HepC specialist and as such, does not understand what he needs to be telling me. I suspect that he's applying his standard "bedside manners" by giving me only the info he thinks I need to know. I doubt he is an expert in hepatitis, but is an expert in the digestive system in general; I needed to know wherein lies the difference.
"....you are not understanding the true nature of your illness and confusing yourself with a lot of unfounded speculation...."
Well, considering the number of mandays spent online (here and elsewhere) I'd say my issue is not so much not understanding as not communicating or expressing my questions properly.
In hindsight, I wish I had web-searched ESLD-related topics before posting here instead of asking here first.
Moreover, I think the real take-away (for me) is about getting a better handle on who is doing the treating and the relationship between dr. and patient. Thank-you for that information.
BigDaddy_59:
thank-you for your words! I know everyone is different, but telling me that stage4 can stretch out over 10 years is really answering my primary question. I'm really not emotionally bound to my condition, I am OK with what I have. Not even scared for my future, so living in the NOW has not been an issue.
But I'm married and I don't/didn't want to leave my wife saddled and overloaded w/a bunch of crap to have to deal with in my absence. Hence my inquiries.
"So my advice? Learn from yesterday, plan for tomorrow, live for today."
Thanks brother, same to you.
Advocate1955:
Thank you very much for the explanation. I'd have to go back to the records, but i think after 24 weeks i was a non or null responder as I didnt get that close to be partial.
"The viral load goes up and down at any given time.........."
And just as vexing, my understanding is that load is not an indicator of activity either.
"Right now my husband is in Week 13 of the triple therapy."
I'll bet your husband much be feeling pretty happy (all things considered) hitting week 12. I had pretty bad nausea also do you mind telling me what he used for sx?
The 50/50 thing isnt worth elaborating on, and I now believe I dont have cirrhosis, even though HectorSF now has stated above that 'Compensated' is "early-stage" and elsewhere is noted:
"how badly is the liver damaged? This can be estimated by studying 3 main parameters:"
* the amount of portal inflammation, which is the inflammation around liver cells, bile ducts and veins in parts of the liver;
* the amount of lobular inflammation, which is the amount of inflammation in the liver lobule itself; and
* the amount of fibrosis, which is an early stage in the development of liver cell scarring (cirrhosis).
So, I know that I have pretty severe bridged-scarring (maybe 50% of my liver affected) so I assumed that meant I was at least at 'early-stage' which is why I said I figured I was compensated.
The trial-results I read said differently, can you point me to your reference?
"Of course you stage of liver damage, age, weight, general health, etc. all have to be factored in."
All factors considered, I'm feeling pretty good for my age. I eat healthy, dont stress out, am in good relationship, etc... but, your point re: stopping (or slowing) further damage really hits.
So, i suppose if I can find a way to handle sx enough to work I'll follow your advice. My only concern is starting tx then having to stop/pause bec i need to maintain my income stream.
Proactive:
"....to be seen at one of the finest teaching medical centers in the country...."
Man, that really is pretty inarguable, isn't it. Thanks for the link - I'll follow it. For me, even the little things (like the cost of gas, time, etc... ) factor in a big way. I wish they didn't, because I'm sure someone will reply "what's more important than staying alive?"
and its hard (if not impossible) to justify expense against that.
jules2551:
"Stop speculating! It will drive you insane. Enjoy your holidays and move forward."
Well put! I'll wait to hear from dr. Seek biopsy in new year, along w/2nd opinion, and take it from there.
Thanks to all of you, my concerns have been mitigated and any speculating has been satisfyed. Happy Holidays to All and may the new year find you each more upbeat and in better health.
As I stated previous, my reasons for writing my post was to get a better handle on whether I had the luxury of time and could hold off tx for 2 years due, mostly, to financial concerns. I would like to sell my house, unload a lot of 'stuff'. Scale down my life so that its more manageable; for me and, more important, for my wife.
My plan was to do this regardless of tx because of economic instability, rising costs, ... For me, 2012 was slated as a time for 'un-burdening', divesting, getting liquid; which alone is a lot of work, job aside. I feel that all of you have provided me with enough insights to ask better questions of the most fitting providers/specialists. Thank-you for that.
I'll come back to post what dr. says, what biopsy reveals, 2nd opinions from a hepatologist when it happens. Until then I'll continue to lurk to stay abreast w/your progress(s)
SPECIFIC REPLYS FOLLOW:
HectorSF:
"Portal and lobular are totally different terms that have nothing to due with staging the liver."
Can you tell me what they reference then:
" A hepatologist is a liver specialist. Your doctor may be an expert in hepatitis or liver disease but if his patients don't know if they are cirrhotic or not that indicated that he doesn't know how to communicate with patients."
Agreed, my dr. is prob not a HepC specialist and as such, does not understand what he needs to be telling me. I suspect that he's applying his standard "bedside manners" by giving me only the info he thinks I need to know. I doubt he is an expert in hepatitis, but is an expert in the digestive system in general; I needed to know wherein lies the difference.
"....you are not understanding the true nature of your illness and confusing yourself with a lot of unfounded speculation...."
Well, considering the number of mandays spent online (here and elsewhere) I'd say my issue is not so much not understanding as not communicating or expressing my questions properly.
In hindsight, I wish I had web-searched ESLD-related topics before posting here instead of asking here first.
Moreover, I think the real take-away (for me) is about getting a better handle on who is doing the treating and the relationship between dr. and patient. Thank-you for that information.
BigDaddy_59:
thank-you for your words! I know everyone is different, but telling me that stage4 can stretch out over 10 years is really answering my primary question. I'm really not emotionally bound to my condition, I am OK with what I have. Not even scared for my future, so living in the NOW has not been an issue.
But I'm married and I don't/didn't want to leave my wife saddled and overloaded w/a bunch of crap to have to deal with in my absence. Hence my inquiries.
"So my advice? Learn from yesterday, plan for tomorrow, live for today."
Thanks brother, same to you.
Advocate1955:
Thank you very much for the explanation. I'd have to go back to the records, but i think after 24 weeks i was a non or null responder as I didnt get that close to be partial.
"The viral load goes up and down at any given time.........."
And just as vexing, my understanding is that load is not an indicator of activity either.
"Right now my husband is in Week 13 of the triple therapy."
I'll bet your husband much be feeling pretty happy (all things considered) hitting week 12. I had pretty bad nausea also do you mind telling me what he used for sx?
The 50/50 thing isnt worth elaborating on, and I now believe I dont have cirrhosis, even though HectorSF now has stated above that 'Compensated' is "early-stage" and elsewhere is noted:
"how badly is the liver damaged? This can be estimated by studying 3 main parameters:"
* the amount of portal inflammation, which is the inflammation around liver cells, bile ducts and veins in parts of the liver;
* the amount of lobular inflammation, which is the amount of inflammation in the liver lobule itself; and
* the amount of fibrosis, which is an early stage in the development of liver cell scarring (cirrhosis).
So, I know that I have pretty severe bridged-scarring (maybe 50% of my liver affected) so I assumed that meant I was at least at 'early-stage' which is why I said I figured I was compensated.
The trial-results I read said differently, can you point me to your reference?
"Of course you stage of liver damage, age, weight, general health, etc. all have to be factored in."
All factors considered, I'm feeling pretty good for my age. I eat healthy, dont stress out, am in good relationship, etc... but, your point re: stopping (or slowing) further damage really hits.
So, i suppose if I can find a way to handle sx enough to work I'll follow your advice. My only concern is starting tx then having to stop/pause bec i need to maintain my income stream.
Proactive:
"....to be seen at one of the finest teaching medical centers in the country...."
Man, that really is pretty inarguable, isn't it. Thanks for the link - I'll follow it. For me, even the little things (like the cost of gas, time, etc... ) factor in a big way. I wish they didn't, because I'm sure someone will reply "what's more important than staying alive?"
and its hard (if not impossible) to justify expense against that.
jules2551:
"Stop speculating! It will drive you insane. Enjoy your holidays and move forward."
Well put! I'll wait to hear from dr. Seek biopsy in new year, along w/2nd opinion, and take it from there.
Thanks to all of you, my concerns have been mitigated and any speculating has been satisfyed. Happy Holidays to All and may the new year find you each more upbeat and in better health.
Kokomojo,
The antinausea medication is a prescription called Zofran.
You asked for the reference regarding results of the Incivek trial. It was called the Realize trial. Another forum member (willb) shared this information with me a few weeks ago (thank you willb).
My husband and I are very hopeful about his chances of obtaining SVR using the triple therapy with Incivek.
Results from the Telaprevir (now marketed as Incivek) Realize trial: previous partial responders were 59% SVR doing 48 weeks. These results can be found on the fda.gov page listed below.
http://www.fda.gov/ForConsumers/ByAudience/ForPatientAdvocates/ucm256328.htm
Treatment Outcome All T12/PR48a
SVR rate
Prior relapsers 86%
Prior partial responders 59%
Prior null responders 32%
If you know what your viral load was before you began your previous therapy and when you ended your previous therapy, we (on the forum) can help you figure out if you were a partial responder or a null responder.
Based on these results, since my husband was a prior partial responder to two previous treatments, we believe he has a 59% chance to achieve SVR with triple therapy. We knew by Week 4 that it was moving in the right direction because his viral load dropped to 78. We knew that it was working by Week 8 because his viral load was UNDETECTED by that time. We are now waiting for the 12 week viral load count, and we are very hopeful that it will remain UNDETECTED, as then he will be able to continue therapy for 48 weeks and hopefully reach SVR.
Kokomojo, it sounds like you're not sure if you were a partial responder to Standard of Care (SOC - combination Interferon and Ribavirin). Before you jump to conclusions about triple therapy possibly not working for you or having a lowered chance of working for you, you need to find out what your response to previous therapy was (partial or null), what your current stage of liver damage is, and find a good hepatologist who specializes in treating Hep C and, preferably, has already begun treating patients with the triple therapies.
Nothing is worth risking further liver damage, speaking as the wife of someone who has HepC and beginning Cirrhosis. Gas, mileage, driving time, copays, the occasional sick day, trips to the store for over the counter medications to ease side effects, trips to the pharmacy for prescription meds to ease side effects, etc., are all worth the CHANCE to obtain SVR. You do not want your wife or other family members to go through the pain of watching you suffer through decompensation, ESLD, liver cancer, possible transplant, or liver failure. Any of those outcomes will cost a lot more than the difficulties and inconveniences of therapy now, if not for you, then certainly for your wife.
I do think it's a great idea to get your life in order (downsize, streamline, make things easier to manage, etc.). We didn't have that luxury prior to any of my husband's 3 treatments, since we have two kids in college and we both work full time to keep them in college. I also think it's a good idea to take care of other important business such as making sure your will is updated, making sure your health care directive and power of attorney are all in order, adding supplemental health insurance policies (if you can) increasing life insurance (if you can), and making extra payments into retirement funds (if you can). We did make sure that we took care of all of that when we first learned of my husband's diagnosis. Our decision was to be very proactive, treat very aggressively and as soon as possible, plan for the worst, and pray for the best. My husband wanted to do everything possible to become SVR as soon as possible so that the kids and I would hopefully not have to face a future of caring for him through liver cancer or liver failure. So he pushes through each treatment with optimism and the spirit of a warrior, even when he's sick, whatever is needed to reach that goal of SVR=chance at a longer, healthier life with family. On occasion, when he feels like quitting because of side effects, the kids and I remind him that if he quits, we know what the outcome will be (virus), but if he continues, we know that he will have a chance to be virus free.
Advocate1955
The antinausea medication is a prescription called Zofran.
You asked for the reference regarding results of the Incivek trial. It was called the Realize trial. Another forum member (willb) shared this information with me a few weeks ago (thank you willb).
My husband and I are very hopeful about his chances of obtaining SVR using the triple therapy with Incivek.
Results from the Telaprevir (now marketed as Incivek) Realize trial: previous partial responders were 59% SVR doing 48 weeks. These results can be found on the fda.gov page listed below.
http://www.fda.gov/ForConsumers/ByAudience/ForPatientAdvocates/ucm256328.htm
Treatment Outcome All T12/PR48a
SVR rate
Prior relapsers 86%
Prior partial responders 59%
Prior null responders 32%
If you know what your viral load was before you began your previous therapy and when you ended your previous therapy, we (on the forum) can help you figure out if you were a partial responder or a null responder.
Based on these results, since my husband was a prior partial responder to two previous treatments, we believe he has a 59% chance to achieve SVR with triple therapy. We knew by Week 4 that it was moving in the right direction because his viral load dropped to 78. We knew that it was working by Week 8 because his viral load was UNDETECTED by that time. We are now waiting for the 12 week viral load count, and we are very hopeful that it will remain UNDETECTED, as then he will be able to continue therapy for 48 weeks and hopefully reach SVR.
Kokomojo, it sounds like you're not sure if you were a partial responder to Standard of Care (SOC - combination Interferon and Ribavirin). Before you jump to conclusions about triple therapy possibly not working for you or having a lowered chance of working for you, you need to find out what your response to previous therapy was (partial or null), what your current stage of liver damage is, and find a good hepatologist who specializes in treating Hep C and, preferably, has already begun treating patients with the triple therapies.
Nothing is worth risking further liver damage, speaking as the wife of someone who has HepC and beginning Cirrhosis. Gas, mileage, driving time, copays, the occasional sick day, trips to the store for over the counter medications to ease side effects, trips to the pharmacy for prescription meds to ease side effects, etc., are all worth the CHANCE to obtain SVR. You do not want your wife or other family members to go through the pain of watching you suffer through decompensation, ESLD, liver cancer, possible transplant, or liver failure. Any of those outcomes will cost a lot more than the difficulties and inconveniences of therapy now, if not for you, then certainly for your wife.
I do think it's a great idea to get your life in order (downsize, streamline, make things easier to manage, etc.). We didn't have that luxury prior to any of my husband's 3 treatments, since we have two kids in college and we both work full time to keep them in college. I also think it's a good idea to take care of other important business such as making sure your will is updated, making sure your health care directive and power of attorney are all in order, adding supplemental health insurance policies (if you can) increasing life insurance (if you can), and making extra payments into retirement funds (if you can). We did make sure that we took care of all of that when we first learned of my husband's diagnosis. Our decision was to be very proactive, treat very aggressively and as soon as possible, plan for the worst, and pray for the best. My husband wanted to do everything possible to become SVR as soon as possible so that the kids and I would hopefully not have to face a future of caring for him through liver cancer or liver failure. So he pushes through each treatment with optimism and the spirit of a warrior, even when he's sick, whatever is needed to reach that goal of SVR=chance at a longer, healthier life with family. On occasion, when he feels like quitting because of side effects, the kids and I remind him that if he quits, we know what the outcome will be (virus), but if he continues, we know that he will have a chance to be virus free.
Advocate1955
Hats off and thumbs up to both you and your husband -- so many people ignore the diagnosis, or go into denial, or simply hem and haw -- whereas your husband has taken the stance to be invested in his health and proactive in regards to disease. Knowing the natural history of this disease and the very real negative impacts that go with progress should be incentive enough if liver damage is apparent. Kudos to you two on getting informed and gettin' busy!
Certainly I respect people's decision to 'wait' it out for the 'right' time before treating, but oftentimes the virus does not wait, and progress is not predictable -- I very much pray that your husband is successful this round... a third time treating and still pushing ... a warrior indeed :). And very lucky and blessed to have you and the kids by his side.
kokomojo:
Good luck whatever your decision on treatment... it's been ten years in the making perhaps, but with stage 3 all the way back then, time is not on your side... your chances of success with treatment will only decline with time. I hope your biopsy brings you the best results possible; hopefully it will not show cirrhosis, but even If it does, take heart in the fact that you are well-compensated and you still have time to stop the virus in its tracks. Best wishes.
Merry Christmas to all. ~eureka
Certainly I respect people's decision to 'wait' it out for the 'right' time before treating, but oftentimes the virus does not wait, and progress is not predictable -- I very much pray that your husband is successful this round... a third time treating and still pushing ... a warrior indeed :). And very lucky and blessed to have you and the kids by his side.
kokomojo:
Good luck whatever your decision on treatment... it's been ten years in the making perhaps, but with stage 3 all the way back then, time is not on your side... your chances of success with treatment will only decline with time. I hope your biopsy brings you the best results possible; hopefully it will not show cirrhosis, but even If it does, take heart in the fact that you are well-compensated and you still have time to stop the virus in its tracks. Best wishes.
Merry Christmas to all. ~eureka
Hi Advocate1955
Zofran it is then, x-tra large please:)
"These results can be found on the fda.gov page listed below..."
I think I landed on the 32% because I thought I was a null responder, but now feel that quibbling over strict label defs should not be the issue; specially when PPR brings the rate/odds up by 27%
"If you know what your viral load was ..... we can help you figure out if you were a partial responder or a null responder"
Thank-you. When i get that info I'll post. If memory serves, I started out well over a million and was at about 40K at 24 weeks.
Big reduction, but sadly not 'undetected'.
"...was a prior partial responder to two previous treatments.... by Week 8 because his viral load was UNDETECTED"
Wow, that in and of itself brings me hope.
"... to find out what your response to previous therapy was, your current stage of liver damage is..."
I hear you and will do; thanks so much.
"...those outcomes will cost a lot more than the difficulties and inconveniences of therapy now, if not for you, then certainly for your wife."
You know, I've been focusing more on my 'absence' than my burden in hospitalization. Thanks for helping me put my priorities in order. Do you mind telling me: what were your husbands' symptoms at the point of "beginning Cirrhosis"? Was it physically obvious or first revealed in biopsy and blood-panel?
"...your will is updated, making sure your health care directive and power of attorney..."
Well, I have no insurance beyond my wife's health insurance and wife is sole beneficiary by default. I've been unemploy(ed|able) for 2 years now, but am drawing income from contract programming. So apart from too many posessions, more house than 2 people need, too much land to tend, too many gardens, crop beds, animals (pigs, chickens), etc... for one person to manage, scaling down is pretty straighforward; just one stretch in a long road ahead:)
I'm sure your husband's warrior resolve stems (at least in part) from you and your childrens' unwavering commitment to his cause. He's lucky for that, as am I in having a wife who helps me persevere.
Best of luck for you and yours, Advocate1955
Zofran it is then, x-tra large please:)
"These results can be found on the fda.gov page listed below..."
I think I landed on the 32% because I thought I was a null responder, but now feel that quibbling over strict label defs should not be the issue; specially when PPR brings the rate/odds up by 27%
"If you know what your viral load was ..... we can help you figure out if you were a partial responder or a null responder"
Thank-you. When i get that info I'll post. If memory serves, I started out well over a million and was at about 40K at 24 weeks.
Big reduction, but sadly not 'undetected'.
"...was a prior partial responder to two previous treatments.... by Week 8 because his viral load was UNDETECTED"
Wow, that in and of itself brings me hope.
"... to find out what your response to previous therapy was, your current stage of liver damage is..."
I hear you and will do; thanks so much.
"...those outcomes will cost a lot more than the difficulties and inconveniences of therapy now, if not for you, then certainly for your wife."
You know, I've been focusing more on my 'absence' than my burden in hospitalization. Thanks for helping me put my priorities in order. Do you mind telling me: what were your husbands' symptoms at the point of "beginning Cirrhosis"? Was it physically obvious or first revealed in biopsy and blood-panel?
"...your will is updated, making sure your health care directive and power of attorney..."
Well, I have no insurance beyond my wife's health insurance and wife is sole beneficiary by default. I've been unemploy(ed|able) for 2 years now, but am drawing income from contract programming. So apart from too many posessions, more house than 2 people need, too much land to tend, too many gardens, crop beds, animals (pigs, chickens), etc... for one person to manage, scaling down is pretty straighforward; just one stretch in a long road ahead:)
I'm sure your husband's warrior resolve stems (at least in part) from you and your childrens' unwavering commitment to his cause. He's lucky for that, as am I in having a wife who helps me persevere.
Best of luck for you and yours, Advocate1955
(Hey sysop: Why are all my comments set To printze?)
Thanks for the positive note!
Its really a balancing act for me. I know I have to do this, and sooner than later. But the preparation of reducing stressors (financial, mortgage, chore-burdens, etc...) is really going
to factor during the time i'm in tx.
My wife went thru my tx 10yrs ago and the thought of me going through it again (w/harsher sx) has her pretty spooked.
Watching her going thru what I'm experiencing again won't help if she has to do the work of 2 and endure the brunt of suffering my pains as well. (I tried (faking) upbeatness last time but she saw right through it).
So, i'm hoping that scaling waay down, have a little $ in the
bank as a cushion and (hopefully) having some sembalance of functionality will make the experience more endurable for us both.
Its almost midnight, but Merry Christmas to you too!
Thanks for the positive note!
Its really a balancing act for me. I know I have to do this, and sooner than later. But the preparation of reducing stressors (financial, mortgage, chore-burdens, etc...) is really going
to factor during the time i'm in tx.
My wife went thru my tx 10yrs ago and the thought of me going through it again (w/harsher sx) has her pretty spooked.
Watching her going thru what I'm experiencing again won't help if she has to do the work of 2 and endure the brunt of suffering my pains as well. (I tried (faking) upbeatness last time but she saw right through it).
So, i'm hoping that scaling waay down, have a little $ in the
bank as a cushion and (hopefully) having some sembalance of functionality will make the experience more endurable for us both.
Its almost midnight, but Merry Christmas to you too!
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