Aa
to tx or not tx
49 yrs old
genotype 2b
vl 750,000/ml
liver func. normal
asymptomatic.
awaiting biopsy results.
anyone similar tx successfully? SVR how long?
still indecisive about treating.
those who have, what about sides? what were they like?
genotype 2b
vl 750,000/ml
liver func. normal
asymptomatic.
awaiting biopsy results.
anyone similar tx successfully? SVR how long?
still indecisive about treating.
those who have, what about sides? what were they like?
i'd like some info on those folks past the 7 year mark if anyone can guide me towards it.
skeptical? - no. realistic (for me). i know what it's like to have the 'mental' part take over. every second, every day, every heartbeat, every breath it's eating, eating, eating.
I know lots about this. heck, i'm almost used to it.
was diagnosed 7 (going on 8) yrs. ago.
these are the reasons i can think of now that i might hesitate.
(1) there is no vaccine. it's not polio. yet. 5 yrs. down the road may find a cure not available to those that have undergone tx, and yes, come out of remission, for whatever reason. It might easily be just as available to everyone. Today, i've still a choice about that, depending on biop results.
(2) the body produces small amts. of interferon. (i realize this is preaching to the choir) When it's bombarded w/ it it's chemotherapy. If I'm doing chemo. i want good odds there's payoff at other end. my info tells me, because of genotype, low vl etc. the odds are decent.
(3)having not read anything about these folks that have been 'cured' since i've been diagnosed, i can only formulate my opinions on the info i gather.
here's where it's at, for me, so far;
(1)my gi will give me his opinion w/biop results. as of now he's said there's a 70% chance i can be 'cured'. discuss more w/him post biop results.
(2)my attending is against TX today, but will discuss again w/ biop results.
(3)many many on message boards have decided against tx for many many reasons
(4)MOST folks that have undergone tx, that i've read posts of, are pro TX but except for one, who's had a SVR for three yrs., they've only been 'cured' 18 mos or less, SO FAR. I realize this could be because the long term SVR has gone on w/their lives. I would too. None-the-less, i can't be SURE about that.
(5) i've read one post from a person saying it came back after four yrs.
(6) obviously the majority of the posts i've read, of those that have tried tx, and failed a SVR, understandably regret going thru it.
this is the info i've gathered so far.
my personal info is the top post of this thread. missing is, i drink so little that going w/out it is not an issue and i'm otherwise healthy.
armed w/that info here's what I plan to do.
(1) get biop results (Tue. at earliest) I've had the biopsy.
(2) discuss results and options w/ GI
(3) discuss again w/attending
(4) get 2nd opinion from another hepatologist. (i've already reached out to a few)
(5) make a decision.
in small amt of time i've left before results, i've little more to do but process as much info as i can because, like some of you, the mental obsessive aspect of it all bothers me very much too. I'm not sure i can NOT undergo TX if it's an option.
i have the scripts lying before me waiting for fulfillment - or not.
800mg cop/day
1 peg pop/wk
time will tell. (wonder how many liver cells this opus cost me)
skeptical? - no. realistic (for me). i know what it's like to have the 'mental' part take over. every second, every day, every heartbeat, every breath it's eating, eating, eating.
I know lots about this. heck, i'm almost used to it.
was diagnosed 7 (going on 8) yrs. ago.
these are the reasons i can think of now that i might hesitate.
(1) there is no vaccine. it's not polio. yet. 5 yrs. down the road may find a cure not available to those that have undergone tx, and yes, come out of remission, for whatever reason. It might easily be just as available to everyone. Today, i've still a choice about that, depending on biop results.
(2) the body produces small amts. of interferon. (i realize this is preaching to the choir) When it's bombarded w/ it it's chemotherapy. If I'm doing chemo. i want good odds there's payoff at other end. my info tells me, because of genotype, low vl etc. the odds are decent.
(3)having not read anything about these folks that have been 'cured' since i've been diagnosed, i can only formulate my opinions on the info i gather.
here's where it's at, for me, so far;
(1)my gi will give me his opinion w/biop results. as of now he's said there's a 70% chance i can be 'cured'. discuss more w/him post biop results.
(2)my attending is against TX today, but will discuss again w/ biop results.
(3)many many on message boards have decided against tx for many many reasons
(4)MOST folks that have undergone tx, that i've read posts of, are pro TX but except for one, who's had a SVR for three yrs., they've only been 'cured' 18 mos or less, SO FAR. I realize this could be because the long term SVR has gone on w/their lives. I would too. None-the-less, i can't be SURE about that.
(5) i've read one post from a person saying it came back after four yrs.
(6) obviously the majority of the posts i've read, of those that have tried tx, and failed a SVR, understandably regret going thru it.
this is the info i've gathered so far.
my personal info is the top post of this thread. missing is, i drink so little that going w/out it is not an issue and i'm otherwise healthy.
armed w/that info here's what I plan to do.
(1) get biop results (Tue. at earliest) I've had the biopsy.
(2) discuss results and options w/ GI
(3) discuss again w/attending
(4) get 2nd opinion from another hepatologist. (i've already reached out to a few)
(5) make a decision.
in small amt of time i've left before results, i've little more to do but process as much info as i can because, like some of you, the mental obsessive aspect of it all bothers me very much too. I'm not sure i can NOT undergo TX if it's an option.
i have the scripts lying before me waiting for fulfillment - or not.
800mg cop/day
1 peg pop/wk
time will tell. (wonder how many liver cells this opus cost me)
A virus is not a cancer. It cannot be "in remission". It is either alive or dead. If you still have a tiny little bit of virus left when you finish tx it will replicate like mad and show up on your next PCR test (in 3 months or 6 months). If it doesn't show up for a whole year after tx you are considered cured. I am interested to know why you are so sceptical.
Prove it's gone? Well, I have been on NO meds for over a year. I was tested down to 5 iu/ml after a year and was undetectable. The original Peg trial patients (a few thousand folks) are now going past the 7 year mark. They are still clear. Thats where the word "cured" is comming from. The odds they post now are that if you are clear at 6 months post tx your odds are 95% that it is gone. Past 1 year and that number is 99%. They think that any who get it back after 1 year are new infections and not a relapse. If its gonna come back it does so right away. I have seen it happen too many times. It comes back FAST.
I am 52 (I think).
I WAS a type 1b....probably had it for 25 or 30 years.
I had no discernable symptoms....I felt fine
I had no biopsy so I don't know what damage levels I was at. I was going to treat this anyways so I saw no need for a biopsy.
I did have a constant high white count and my alt/ast levels were always on the high end of normal.
I did get sick (flu's and colds and infections and such) a fair amount of the time but I cannot say with certainty that it was related to the Hcv. I do think it's noteworthy that I have not been sick AT ALL since I finished the meds. I now get paid for my unused sick days instead of using them all up every year.
There are folks here who are cleared past 2 years. They just don't post often. They are out living now. They pop in sometimes to say hi.
This part, the part about deciding wether or not to do tx, is probably the hardest thing to do. I understand. It's scarey. The side effects can be horrible for a few of the folks. But since the Pegasys was approved that problem has gotten WAY better. I did not have that option back when I had to do Peg/Intron. I did 50 weeks of tx. my sides were bad, but some had it worse. I saw some of the Pegasys folks,like Britgirl, who had NO discernable sides at all. I was jealous. But still, I missed no work really. I used all my sick days and vacation days fighting this. But nothing beyond that.
Within 2 weeks after I was done the sides started to lift. My thin hair came right back. The skin problems were better after 2 months and got better in stages every month. By 6 months post I was feeling GREAT. And have ever since.
It's a tough decision. To listen to us talk about the sides here would scare anybody. But the truth is that they just aren't as bad as they sound. It makes us feel better to talk about them.
Weigh your pros and cons. You really need to be able to commit to this if you are gonna do it. Otherwise the fear will turn into mild depression and you will be miserable.
There IS a real prize to be gained at the end though. I am here to testify to that. It really IS all worth it. I would do it again if I had to go back and make the decision. I have absolutely NO regrets.....none.
Good luck as you wrestle with your fears on this. Do let us know what you decide. Either way I support you.
I am 52 (I think).
I WAS a type 1b....probably had it for 25 or 30 years.
I had no discernable symptoms....I felt fine
I had no biopsy so I don't know what damage levels I was at. I was going to treat this anyways so I saw no need for a biopsy.
I did have a constant high white count and my alt/ast levels were always on the high end of normal.
I did get sick (flu's and colds and infections and such) a fair amount of the time but I cannot say with certainty that it was related to the Hcv. I do think it's noteworthy that I have not been sick AT ALL since I finished the meds. I now get paid for my unused sick days instead of using them all up every year.
There are folks here who are cleared past 2 years. They just don't post often. They are out living now. They pop in sometimes to say hi.
This part, the part about deciding wether or not to do tx, is probably the hardest thing to do. I understand. It's scarey. The side effects can be horrible for a few of the folks. But since the Pegasys was approved that problem has gotten WAY better. I did not have that option back when I had to do Peg/Intron. I did 50 weeks of tx. my sides were bad, but some had it worse. I saw some of the Pegasys folks,like Britgirl, who had NO discernable sides at all. I was jealous. But still, I missed no work really. I used all my sick days and vacation days fighting this. But nothing beyond that.
Within 2 weeks after I was done the sides started to lift. My thin hair came right back. The skin problems were better after 2 months and got better in stages every month. By 6 months post I was feeling GREAT. And have ever since.
It's a tough decision. To listen to us talk about the sides here would scare anybody. But the truth is that they just aren't as bad as they sound. It makes us feel better to talk about them.
Weigh your pros and cons. You really need to be able to commit to this if you are gonna do it. Otherwise the fear will turn into mild depression and you will be miserable.
There IS a real prize to be gained at the end though. I am here to testify to that. It really IS all worth it. I would do it again if I had to go back and make the decision. I have absolutely NO regrets.....none.
Good luck as you wrestle with your fears on this. Do let us know what you decide. Either way I support you.
Man, I was just trying to think of a way to say all that. You just saved me a lot of typing!!! Thanks!!!
three years!
VERY encouraging.
VERY encouraging.
see my 'bio' top of thread.
first one.
add to that;
(1) I don't drink
(2) had the biopsy on tues. waiting for results.
appreciate comments. case sounds similar to mine cept i don't pray a lot.
how bout the hair?
first one.
add to that;
(1) I don't drink
(2) had the biopsy on tues. waiting for results.
appreciate comments. case sounds similar to mine cept i don't pray a lot.
how bout the hair?
there is no proof to me yet that any of you are 'CURED', long term.
you bash the med communitiy on one side cause they can treat you forever then assume you're now set for life after being guinea pigs for a potentially very risky experiment.
I PRAY i'm wrong.
Chances are 99.7% i'm going to dive in right after you but there are two sides to it in my opinion.
Thalidomide.
you bash the med communitiy on one side cause they can treat you forever then assume you're now set for life after being guinea pigs for a potentially very risky experiment.
I PRAY i'm wrong.
Chances are 99.7% i'm going to dive in right after you but there are two sides to it in my opinion.
Thalidomide.
I was diagnosed with geno 2b, VL of 1.5 million, minor fibrosis in 1999. I was 48. Was one of the first to do Peginterferon & Ribavirin. Within 8 weeks was declared undetectable. Has been three years post treatment and still undetectable. After six months of SVR Doctors are calling it a cure as opposed to remission.
Here's the deal. I would get a biopsy and to see extent of liver damage, if any. If none or if minor you have to make a decision whether to do treatment or not. Being a 2b you have an excellent chance of kicking this virus. If you were a geno 1 I would suggest you hold off unless you had severe or progressive liver damage based on 1 - 2 biopsies with 3-5 years in between. An approach would be to do the treatment and make sure your Dr. agrees to check you at 12 weeks. At this point you will have a good idea if it is going to work or not. You can decide not to do the treatment but will need to adjust your lifestyle. No drinking AT ALL.
I decided to do it and it worked. I am back to my former lifestyle which is drinking moderately on the weekends. My last physical in November was virus = 0, ALT 28, AST 20!
Treatment is tough. But I learned a lot from it. I really appreciate life sooo much more and empathize & sympathize with everyone who has a cross to carry such as hep or cancer. Pray about it. I'm sure you will make the right decision for you.
Regards,
Barry
Here's the deal. I would get a biopsy and to see extent of liver damage, if any. If none or if minor you have to make a decision whether to do treatment or not. Being a 2b you have an excellent chance of kicking this virus. If you were a geno 1 I would suggest you hold off unless you had severe or progressive liver damage based on 1 - 2 biopsies with 3-5 years in between. An approach would be to do the treatment and make sure your Dr. agrees to check you at 12 weeks. At this point you will have a good idea if it is going to work or not. You can decide not to do the treatment but will need to adjust your lifestyle. No drinking AT ALL.
I decided to do it and it worked. I am back to my former lifestyle which is drinking moderately on the weekends. My last physical in November was virus = 0, ALT 28, AST 20!
Treatment is tough. But I learned a lot from it. I really appreciate life sooo much more and empathize & sympathize with everyone who has a cross to carry such as hep or cancer. Pray about it. I'm sure you will make the right decision for you.
Regards,
Barry
Point well Taken !
Mr. B
Mr. B
were you ill before u started tx?
the liver is regenerating all the time which is a reason it's such a slow moving disease.
what was genotype?
what stage liv damage?
how old are you?
all cases are diff.
the liver is regenerating all the time which is a reason it's such a slow moving disease.
what was genotype?
what stage liv damage?
how old are you?
all cases are diff.
good points
but can you prove it's gone?
long term?
only time will tell for ALL of us.
but can you prove it's gone?
long term?
only time will tell for ALL of us.
i'm interested in 'in most respects i feel quite healthy now'
did you feel bad before you started tx?
here's a reason i'm asking.
at this point - (before having biop results which i'll have shortly), my attending dr. thinks i def. should avoid tx and wait.
i'm asymptomatic.
he's the same age as we are so he's aware of the age thing.
it's a tough call.
if i take care of the liver (which we have to do either way, tx or no tx) i could escape a potential bullet.
if i don't tx i could be walking around wearing a target.
hard to decide. not enough people out there, that i can find, that can get that life insurance because they've got a SVR for longer than five years.
18 mos SVR is longest i've heard of so far.
soujourn - yes 23 mos but bottom line is still 18 mos so far at most.
not that this isn't INCREDIBLY positive but there's still a shot it can come back. we don't have long term results that i can find.
IF, and I mean IF, i come out with biop. results that show minimal damage, I'll have to make a tough decision.
if the organs' in trouble then it's a no brainer.
did you feel bad before you started tx?
here's a reason i'm asking.
at this point - (before having biop results which i'll have shortly), my attending dr. thinks i def. should avoid tx and wait.
i'm asymptomatic.
he's the same age as we are so he's aware of the age thing.
it's a tough call.
if i take care of the liver (which we have to do either way, tx or no tx) i could escape a potential bullet.
if i don't tx i could be walking around wearing a target.
hard to decide. not enough people out there, that i can find, that can get that life insurance because they've got a SVR for longer than five years.
18 mos SVR is longest i've heard of so far.
soujourn - yes 23 mos but bottom line is still 18 mos so far at most.
not that this isn't INCREDIBLY positive but there's still a shot it can come back. we don't have long term results that i can find.
IF, and I mean IF, i come out with biop. results that show minimal damage, I'll have to make a tough decision.
if the organs' in trouble then it's a no brainer.
Nope...There's no reason to treat this. Hcv kills 8,000-10,000 people every year. They all lived with it and are now SO happy.
Hcv is the leading cause of liver transplants. I am just sure that all of those folks with all those new livers who "still" have Hcv are extatic that they got to live with it.
Just think of all the people who are happy that you will live with this. All those doctors who get to do all those tests...all the time. They can make all kinds of money for many years doing this. All thos insurance companies who don't need to insure you because you have a chronic condition. They are all REAL happy since it will get expensive for them when you do start gettin sick. Your employer is likely smiling simce you can't change jobs or you will lose your health insurance. He can just use you until you start gettin sick....and then he can fire you because you become a drag on his workforce. And The Dragon is surely all excited about this. He gets to eat at your liver....every minute...of every hour...of every day. He never sleeps. He's happy...all warm and secure in there....with an unlimited supply of cells to destroy.
Yep...I want to live my life like that. Always talkin about it. Telling any potential sex partner that "You really have a low risk if you sleep with me". Telling every doctor and dentist that I have this so they can prescribe only "liver friendly" meds that may be less effective for whatever ailment I may have. I want to always think about eating only "liver friendly" foods. And Heck, I never wanted to drink alcohol anyways. Yep, I want to freak out every time I get a cut and explain to anyone I may bleed on how they now need to get tested.
Yep, I want to go to bed every night wondering just what Stage/Grade my liver is at now. Knowing that the older I get and the longer I have this that my odds of clearing this go down. Knowing that the more damage I get the lower my odds are of clearing. Knowing that the damage we have when we start tx is typically the damage we are left with even if we clear.
Nope....I can see NO good reason to do tx. I want to live like THAT.
But it's too late for me. I did my tx and killed my type 1b Dragon.....over a year ago. And now I am healthy and happier that I have ever been. I have no lasting side effects from the tx. I have no reason to test again. I can have a beer if I want to. I eat what I want. I have not been sick for even one single day since I finished the meds. My hair came back, my skin is fine, my nails are healthy, ALL the sides went away.
But still, I am sad.....because now I don't get the chance to live WITH it. I will miss all that FUN.
Hcv is the leading cause of liver transplants. I am just sure that all of those folks with all those new livers who "still" have Hcv are extatic that they got to live with it.
Just think of all the people who are happy that you will live with this. All those doctors who get to do all those tests...all the time. They can make all kinds of money for many years doing this. All thos insurance companies who don't need to insure you because you have a chronic condition. They are all REAL happy since it will get expensive for them when you do start gettin sick. Your employer is likely smiling simce you can't change jobs or you will lose your health insurance. He can just use you until you start gettin sick....and then he can fire you because you become a drag on his workforce. And The Dragon is surely all excited about this. He gets to eat at your liver....every minute...of every hour...of every day. He never sleeps. He's happy...all warm and secure in there....with an unlimited supply of cells to destroy.
Yep...I want to live my life like that. Always talkin about it. Telling any potential sex partner that "You really have a low risk if you sleep with me". Telling every doctor and dentist that I have this so they can prescribe only "liver friendly" meds that may be less effective for whatever ailment I may have. I want to always think about eating only "liver friendly" foods. And Heck, I never wanted to drink alcohol anyways. Yep, I want to freak out every time I get a cut and explain to anyone I may bleed on how they now need to get tested.
Yep, I want to go to bed every night wondering just what Stage/Grade my liver is at now. Knowing that the older I get and the longer I have this that my odds of clearing this go down. Knowing that the more damage I get the lower my odds are of clearing. Knowing that the damage we have when we start tx is typically the damage we are left with even if we clear.
Nope....I can see NO good reason to do tx. I want to live like THAT.
But it's too late for me. I did my tx and killed my type 1b Dragon.....over a year ago. And now I am healthy and happier that I have ever been. I have no lasting side effects from the tx. I have no reason to test again. I can have a beer if I want to. I eat what I want. I have not been sick for even one single day since I finished the meds. My hair came back, my skin is fine, my nails are healthy, ALL the sides went away.
But still, I am sad.....because now I don't get the chance to live WITH it. I will miss all that FUN.
My brain fog not yours! Was thinking of "balrog"
You are spot on the right track.
Interferon therapy can be very hard on an older person (even a young and vibrant older person such as yourself!) and the expected results are not so promising as they are in people under 60.
There are a lot of reasons you have to consider the treatment carefully. Your doctor was incredibly candid with you. Doctors do not want to be sued for "withholding treatment." Malpractice being what it is in this country, sometimes a legal opinion and medical opinion are hard to tell apart.
Anyway, live well. Make excellent, deliberate and careful lifestyle choices to preserve the health of your liver and the rest of you. While liver disease can progress faster in someone infected over age 50, it may not matter that much at the end of the day. By the time you have any serious liver damage, you could be into your 80's or even your 90's, God willing.
Risks of interferon treatment (especially heart complications) increase the longer you are treated and the older you are.
I am not a doctor and this may or may not apply to you. Engage this doctor in more discussion when the biopsy report comes back and be very clear that you are open to the truth. Sounds to me like your doctor will work with you and give you good advice.
I hope this helps,
thanbey
Interferon therapy can be very hard on an older person (even a young and vibrant older person such as yourself!) and the expected results are not so promising as they are in people under 60.
There are a lot of reasons you have to consider the treatment carefully. Your doctor was incredibly candid with you. Doctors do not want to be sued for "withholding treatment." Malpractice being what it is in this country, sometimes a legal opinion and medical opinion are hard to tell apart.
Anyway, live well. Make excellent, deliberate and careful lifestyle choices to preserve the health of your liver and the rest of you. While liver disease can progress faster in someone infected over age 50, it may not matter that much at the end of the day. By the time you have any serious liver damage, you could be into your 80's or even your 90's, God willing.
Risks of interferon treatment (especially heart complications) increase the longer you are treated and the older you are.
I am not a doctor and this may or may not apply to you. Engage this doctor in more discussion when the biopsy report comes back and be very clear that you are open to the truth. Sounds to me like your doctor will work with you and give you good advice.
I hope this helps,
thanbey
YEA WTG girl!! I was sooooo hoping you would get good news! thats fantastic. I am all kindsa happy for you! Auggieaz/OHC
I am SOOOOOOO HAPPY 4 U!!!....THIS IS THE BEST NEWS !!!! I'm gonna call you !!
I WAS 2b, b/now 18 mo post-tx, b/I cl'ed after only 18 days of tx, so I've been virus free for 23 mo. Bad transfusion in 7/79. For me, sides were no big deal, lifestyle changes no big deal, being disease-free VERY BIG DEAL.
I was in a similar position to you in that I had no symptoms and thought "why jeopardize my present good health?". I was finding out I was genotype 3a that changed all that for me. Two reasons, only 24 weeks tx and at a lower dose of Riba, a much better chance of success (80 - 85%). I have been SVR for eighteen months, finished tx Sept 2002. I worked all through and didn't suffer too much, no insomnia, no depression, no low platelets, WBC,RBC. My hospital do indeed use the word "cured", and have completely discharged me from their books. They say it is unnecessary for me to have any more PCRS and I won't .
Best of luck in whatever you decide (PS.sorry if you thought I was rude the other day. I had just two minutes at work and "your point is?" was nice and short. I really was confused by your comment, not trying to be a smart ass)
Best of luck in whatever you decide (PS.sorry if you thought I was rude the other day. I had just two minutes at work and "your point is?" was nice and short. I really was confused by your comment, not trying to be a smart ass)
great news on your field goal - keep it up. Yeah, post two, it's that kind of a day.
encouraging thanks.
britgirl - don't recall you being rude or responding to any of my thoughts.
someone else? brain fog? you? me?
thanks for your recent views though.
britgirl - don't recall you being rude or responding to any of my thoughts.
someone else? brain fog? you? me?
thanks for your recent views though.
Great news.........I'm so thrilled........lol.......its so wonderful.......im sure you are dancin like a fool........Girlfriend, have a good weekend........Deb
Painted Posies -- I think you are doing right. Only suggestion I'd make would be to keep a close watch on it and have a biopsy every few years to make sure you are not progessing faster than expected.
Befuddled - Congrats on the low VL at 12 wks. Mine was down to 370 at 12 wks and am hoping for undectectable at 24. I don't remember your genotype...are you doing 24 or 48 wks tx?
Befuddled - Congrats on the low VL at 12 wks. Mine was down to 370 at 12 wks and am hoping for undectectable at 24. I don't remember your genotype...are you doing 24 or 48 wks tx?
bolger: I'm 49, was genotype 2, stage 2 fibrosis, did 24 weeks of pegintron/riba. Clear at 12 weeks into tx, at 12 weeks post, and 24 weeks post (recently). Sides: low RBCs (fatigue), low WBCs (had a peg dose reduction midway), depression, hair loss. Kept working as software engineer.
britgirl: you're thinking of balrog1 with the "your point is?", I think.
britgirl: you're thinking of balrog1 with the "your point is?", I think.
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