aw, Judy!! Well the virus took a beating for a while so it bought you some time!
wnose said
Nov 9, 2012
We can't control what life hands to us; but we can control how we react to it.
You're really an example to us Judy, well done!
angelwish said
Nov 9, 2012
Everytime i see your post I am so inspired by your spirit. You will beat this !!
Judy S said
Nov 8, 2012
Thank you, Jeremy. Don't be sad, though; hope is always alive. It's tougher for us 48-weekers as we're cirrhotic and there's still so much to learn about this virus. I was Really thankful to Malcolm for some info that explains exactly how and why we relapse. Before that, I didn't even know what RAVs were. This is where Macolm wrote much about it:
Awesome info, Malcolm; thank you So much! I could never get info like this out of my dr, lol! I will check out your sub-post, as well; this Is interesting, indeed. So much to understand with this virus, eh?
Yeah, the V.L. always fluctuates, and so do the liver enzymes, to a lesser extent of course. I was just shocked at 113 for ALT...wow! Gave me a mini heart attack. Glad to hear it should calm back down again. Hehehe, I've gotta just laugh as now I have a new thing to worry about....RAVs. As has been said, this is a Long, Strange Trip and it keeps on going. But I also keep on going.
-- Edited by Judy S on Wednesday 7th of November 2012 03:45:07 AM
This news literally brought me to tears Judy, Im so sorry this happend.I dont know what to say ............Hang in there lmk if u need anything or to talk!
mallani said
Nov 7, 2012
Hi Judy, I did a sub-post in 'Anaemia is good' discussing RAV's (Resistance-Associated Variants or drug-ristant mutations). If you can struggle through that, you'll see that your rebound (relapse) would be caused by RAV's. Researchers have examined blood from relapsers- in the first months, RAV's are the dominant form of the virus. There are 2 specific RAV's in Geno 1a, and 3 different RAV's in Geno 1b- all patients seem to have these same RAV's. It is interesting that the RAV's do not persist. They revert to the 'in-the-wild' form which is obviously the most effective form of the virus. In Geno 1b ( which has a more stable structure and less liable to mutation), the RAV's have mostly disappeared in 6 months. In Geno 1a it may take 1-2 years for the RAV's to lose their dominance.
There is no consensus on what your VL will be. It will fluctuate as always, but probably will be lower than before Rx.
The rise in ALT is to be expected. It just means the virus is damaging the liver again with release of enzymes from hepatocytes. This should settle down to pre Rx levels.
When you start your next Rx, RAV's will still be a factor- however a combination of drugs will be given so that any RAV's are mopped up.
Judy S said
Nov 7, 2012
Hehehe, so true, Dave! This virus is a persistent one for sure. Like Vernon says, I'll be back to kicking "Vy-rass" (love that one Vernon!!) in a few years when they have interferon-free tx.
One thing I'm wondering is, did it mutate? How can we tell if it did, for those who relapsed? Does anyone know?
I was kind of surprised at my ALT result from yesterday's Lab. It is 113 now. It was in the teens and 20s during tx. Before tx it was always in 40s and 50s. My pre-tx viral load was 4.7 million and now it's 1.4 million. I'm just wondering why my ALT shot up so darned high and if it will come back down.
Somebody else mentioned, after relapse, that her dr told her the V.L. will drop back down after a while. I believe it was sungoddess but not 100% certain. Does anyone have knowlege of this?
davesf said
Nov 7, 2012
Aww, crap. If treatment success was correlated to side effects you'd have wiped out the HCV in you and the next four closest people too. I'm glad your maintaining the positive attitude. My heart goes out to you today.
Shep said
Nov 7, 2012
Oh my dearest Judy--your news brought tears--but your spirit brought smiles! You are an amazing person! Patience will win and there will be a new treatment. Hang tough! Hugs to you and your sweet daughter! Shep
Mary Jane said
Nov 7, 2012
Judy S wrote:
Thanks guys; you're always my supportive forum family.
I'm 45 this month and am very fortunate to have been given the gift of resilience all my life. I felt the blow for 5 mins but then told my daughter we have to celebrate, so we went to Olive Garden for dinner as they're having an awesome special right now. She was thrilled to go out on a Monday night.
We celebrated because as we've all said...what doesn't kill you makes you stronger. And I Am stronger. I'm getting cervical epidurals (series of 3) and it's truly helping some of the joint and muscle pain that the interferon has left me with. I feel Better. My endurance is increasing.
The fear of future tx is gone, as it's no longer "unknown". I know what I went through with PegIntron, Riba, & Vic. I know that they're aiming for interferon-free txs and I believe I can do that. I'm grateful that my liver got a chance to regenerate some, and that my AST & ALT dropped into the teens. This has been another major life experience and no matter if bad or good, they're all life lessons that help us to grow. Just look at how much more educated we all are now, analyzing all labs and philosophizing about effects and possibilities, hehehe! I think we're all winners.
(( hugs )) to you my friend.. life's a journey not a destination... You are " the glass half full gal" thanks for always sharing...I am bummed for you and scared ****less for myself, but this to will pass... I will be pushing , and signing all petitions for the newer treatments to hit the market soon.. enjoy your no more dragon posion days and enjoy your life... I wish you the best peace and love & joy MJ
news said
Nov 7, 2012
Judy, of the several stories of relapse lately, yours hurts me the worst. What a soldier you were. But as you say, now you have seen it, and the fear is lifted. Now your liver has rested, and you are stronger. Now you and your wonderful, strong daughter can go out for Italian on a Monday night. Now you can wait for something that works just as we'll but doesn't put you in the ER twice. I am sad for the news, but I am happy for all you have done and can do. Please check in with us from time to time. Alan
Karen said
Nov 7, 2012
Difficult to hear-after all you went through;(
Your outlook is great-that is sweet music.
Judy S said
Nov 6, 2012
Awesome info, Malcolm; thank you So much! I could never get info like this out of my dr, lol! I will check out your sub-post, as well; this Is interesting, indeed. So much to understand with this virus, eh?
Yeah, the V.L. always fluctuates, and so do the liver enzymes, to a lesser extent of course. I was just shocked at 113 for ALT...wow! Gave me a mini heart attack. Glad to hear it should calm back down again. Hehehe, I've gotta just laugh as now I have a new thing to worry about....RAVs. As has been said, this is a Long, Strange Trip and it keeps on going. But I also keep on going.
-- Edited by Judy S on Wednesday 7th of November 2012 03:45:07 AM
kiwi said
Nov 6, 2012
yeh for me the only thing that hasnt come right so far is my liver enzymes. they are still pretty high. nurse lady said its bit strange. ah well. this whole trip has been pretty strange, no need for it to be 'normal' now eh.
take it easy judy
actually, i lie. my wbc etc are still bloody low. and my liver enzymes are up. go figure. i hope its gonna come normal sometime.
-- Edited by kiwi on Wednesday 7th of November 2012 02:28:12 AM
Phil G said
Nov 6, 2012
So sorry to hear this, Judy. I know you had a rough ride from the beginning. You are tough. Hang in there.
Judy S said
Nov 6, 2012
Thanks guys; you're always my supportive forum family.
I'm 45 this month and am very fortunate to have been given the gift of resilience all my life. I felt the blow for 5 mins but then told my daughter we have to celebrate, so we went to Olive Garden for dinner as they're having an awesome special right now. She was thrilled to go out on a Monday night.
We celebrated because as we've all said...what doesn't kill you makes you stronger. And I Am stronger. I'm getting cervical epidurals (series of 3) and it's truly helping some of the joint and muscle pain that the interferon has left me with. I feel Better. My endurance is increasing.
The fear of future tx is gone, as it's no longer "unknown". I know what I went through with PegIntron, Riba, & Vic. I know that they're aiming for interferon-free txs and I believe I can do that. I'm grateful that my liver got a chance to regenerate some, and that my AST & ALT dropped into the teens. This has been another major life experience and no matter if bad or good, they're all life lessons that help us to grow. Just look at how much more educated we all are now, analyzing all labs and philosophizing about effects and possibilities, hehehe! I think we're all winners.
kiwi said
Nov 6, 2012
ah poo judy. what a bummer mate. hugs xx
tomyboy said
Nov 6, 2012
Sorry to hear of this. You did what you could and better treatment with side effects are coming!!! Keep your head up...better days are coming!!!!
12Step Guy said
Nov 6, 2012
It's likely been pretty devastating to get the news. I expect we all think about it daily, at least I do. It sure would be great if life would give us what we want. But as we all know it doesnt work that way. With or without SVR, each day we are walking upright is a gift (as a matter of fact its evolutionary)
I went into this thinking my prognosis wasnt very good which should have given me cause to back away. But I suspect you like me have been around long enough to know that the more we get knocked down, the stronger we come back. Heres to your getting back in the ring someday and kicking Vy-rass.
2willy said
Nov 6, 2012
Sorry for the news, as others have said with your positive attitude take no prisnoer deminer you will beat this. Just hearing how you cope with this gives me strength to face the same probable news down the road. You are young and an inspiration to all, Thankyou for your courage and posts, Bill and family
JoAnneh said
Nov 6, 2012
Judy, You are young and better tx coming! Thank you for posting! Love, JoAnne
Cinnamon Girl said
Nov 6, 2012
Oh Judy, I can`t tell you how sorry I was to see this newsYou`ve been a real trooper and have always managed to stay cheerful and carry on being supportive to others here, despite having such a rough time yourself on tx. You know you gave it your very best shot, stay strong and positive... your time will come.
Wishing you all the very best, and don`t forget we`re all here for you. Big hug from Jill xxx
greenqueen said
Nov 6, 2012
Really sorry to hear this, Judy - you did all that you possibly could. You have a great attitude and can take some comfort in knowing that things are rapidly moving forward in the development of much less toxic treatments
Much Love Steff xx
LadyAlaise said
Nov 6, 2012
Awww Judy! (huggs!!!!) I am so sorry to hear this! (you've been on my mind lately) I agree with Guru; Your liver got a break, and newer less toxic treatments are coming out...Big Hugs for you!!!!!!!
mallani said
Nov 6, 2012
Judy, my heart goes out to you. You deserved a better result with all the Sx you had to go through. You're a youngster, your liver's had a break, so relax until something less toxic comes along. You'll make it next time. Hugs XX
K2 said
Nov 6, 2012
Oh Dear Judy, I am so dissapointed to hear this news But I must say your attitude is, as always- commendable. you sure did do everything you could and, post tx if we continue to do this, this thing won't stop us or slow us down. Power and strength to you my friend. Love and massive hugs. xxx
hrsetrdr said
Nov 6, 2012
Judy,
I am so sorry to hear this. As you know, I am in the same boat, having halted tx at 16 weeks so I'm anticipating doing treatment with one of the upcoming "pill only" regimens; no interferon for me-thankfully.
Judy S said
Nov 6, 2012
Got my results from 12-week-post today and it's no longer Und. I now have a viral load of 1.4 million. I know a few of us have had the same news, lately. (Also, I was only able to complete 23 weeks of tx, and was supposed to go 48 but body shut down.) Sure I'm disappointed as that tx was the most difficult thing ever, but I won't let it get me down. I know all of our livers get a huge break while on tx; you can see it in our AST and ALT levels, amongst other things. I'll just continue to be good to my liver and wait 2 - 4 years, however long it takes for the interferon-free txs that are currently in trials. I'm OK, knowing I did everything I could. It just wasn't meant to be, this time around. The good thing is that I'm seeing a lot more SVRs than relapses on here, so don't let it get you down if you're awaiting results right now. Hugs to all.
JIme said
Nov 6, 2012
Crap........is all I can say.
You went above and beyond what most people would have done. You should be proud of your effort. I know I am.
"For us, there is only the trying. The rest is not our business." T.S. Elliot
-- Edited by JIme on Tuesday 6th of November 2012 10:38:50 AM
aw, Judy!! Well the virus took a beating for a while so it bought you some time!
We can't control what life hands to us; but we can control how we react to it.
You're really an example to us Judy, well done!
Everytime i see your post I am so inspired by your spirit. You will beat this !!
Thank you, Jeremy. Don't be sad, though; hope is always alive. It's tougher for us 48-weekers as we're cirrhotic and there's still so much to learn about this virus. I was Really thankful to Malcolm for some info that explains exactly how and why we relapse. Before that, I didn't even know what RAVs were. This is where Macolm wrote much about it:
http://hepcfriends.activeboard.com/t51431221/anaemia-is-good/
This news literally brought me to tears Judy, Im so sorry this happend.I dont know what to say
............Hang in there lmk if u need anything or to talk!
Hi Judy, I did a sub-post in 'Anaemia is good' discussing RAV's (Resistance-Associated Variants or drug-ristant mutations). If you can struggle through that, you'll see that your rebound (relapse) would be caused by RAV's. Researchers have examined blood from relapsers- in the first months, RAV's are the dominant form of the virus. There are 2 specific RAV's in Geno 1a, and 3 different RAV's in Geno 1b- all patients seem to have these same RAV's. It is interesting that the RAV's do not persist. They revert to the 'in-the-wild' form which is obviously the most effective form of the virus. In Geno 1b ( which has a more stable structure and less liable to mutation), the RAV's have mostly disappeared in 6 months. In Geno 1a it may take 1-2 years for the RAV's to lose their dominance.
There is no consensus on what your VL will be. It will fluctuate as always, but probably will be lower than before Rx.
The rise in ALT is to be expected. It just means the virus is damaging the liver again with release of enzymes from hepatocytes. This should settle down to pre Rx levels.
When you start your next Rx, RAV's will still be a factor- however a combination of drugs will be given so that any RAV's are mopped up.
Hehehe, so true, Dave! This virus is a persistent one for sure. Like Vernon says, I'll be back to kicking "Vy-rass" (love that one Vernon!!) in a few years when they have interferon-free tx.
One thing I'm wondering is, did it mutate? How can we tell if it did, for those who relapsed? Does anyone know?
I was kind of surprised at my ALT result from yesterday's Lab. It is 113 now. It was in the teens and 20s during tx. Before tx it was always in 40s and 50s. My pre-tx viral load was 4.7 million and now it's 1.4 million. I'm just wondering why my ALT shot up so darned high and if it will come back down.
Somebody else mentioned, after relapse, that her dr told her the V.L. will drop back down after a while. I believe it was sungoddess but not 100% certain. Does anyone have knowlege of this?
Shep
(( hugs )) to you my friend.. life's a journey not a destination... You are " the glass half full gal" thanks for always sharing...I am bummed for you and scared ****less for myself, but this to will pass... I will be pushing , and signing all petitions for the newer treatments to hit the market soon.. enjoy your no more dragon posion days and enjoy your life... I wish you the best peace and love & joy MJ
Difficult to hear-after all you went through;(
Your outlook is great-that is sweet music.
Awesome info, Malcolm; thank you So much! I could never get info like this out of my dr, lol! I will check out your sub-post, as well; this Is interesting, indeed. So much to understand with this virus, eh?
Yeah, the V.L. always fluctuates, and so do the liver enzymes, to a lesser extent of course. I was just shocked at 113 for ALT...wow! Gave me a mini heart attack. Glad to hear it should calm back down again. Hehehe, I've gotta just laugh as now I have a new thing to worry about....RAVs. As has been said, this is a Long, Strange Trip and it keeps on going. But I also keep on going.
-- Edited by Judy S on Wednesday 7th of November 2012 03:45:07 AM
yeh for me the only thing that hasnt come right so far is my liver enzymes. they are still pretty high. nurse lady said its bit strange. ah well. this whole trip has been pretty strange, no need for it to be 'normal' now eh.
take it easy judy
actually, i lie. my wbc etc are still bloody low. and my liver enzymes are up. go figure. i hope its gonna come normal sometime.
-- Edited by kiwi on Wednesday 7th of November 2012 02:28:12 AM
So sorry to hear this, Judy. I know you had a rough ride from the beginning. You are tough. Hang in there.
Thanks guys; you're always my supportive forum family.
I'm 45 this month and am very fortunate to have been given the gift of resilience all my life. I felt the blow for 5 mins but then told my daughter we have to celebrate, so we went to Olive Garden for dinner as they're having an awesome special right now. She was thrilled to go out on a Monday night.
We celebrated because as we've all said...what doesn't kill you makes you stronger. And I Am stronger. I'm getting cervical epidurals (series of 3) and it's truly helping some of the joint and muscle pain that the interferon has left me with. I feel Better. My endurance is increasing.
The fear of future tx is gone, as it's no longer "unknown". I know what I went through with PegIntron, Riba, & Vic. I know that they're aiming for interferon-free txs and I believe I can do that. I'm grateful that my liver got a chance to regenerate some, and that my AST & ALT dropped into the teens. This has been another major life experience and no matter if bad or good, they're all life lessons that help us to grow. Just look at how much more educated we all are now, analyzing all labs and philosophizing about effects and possibilities, hehehe! I think we're all winners.
ah poo judy. what a bummer mate. hugs xx
Sorry to hear of this. You did what you could and better treatment with side effects are coming!!! Keep your head up...better days are coming!!!!
It's likely been pretty devastating to get the news. I expect we all think about it daily, at least I do. It sure would be great if life would give us what we want. But as we all know it doesnt work that way. With or without SVR, each day we are walking upright is a gift (as a matter of fact its evolutionary)
I went into this thinking my prognosis wasnt very good which should have given me cause to back away. But I suspect you like me have been around long enough to know that the more we get knocked down, the stronger we come back. Heres to your getting back in the ring someday and kicking Vy-rass.
Sorry for the news, as others have said with your positive attitude take no prisnoer deminer you will beat this. Just hearing how you cope with this gives me strength to face the same probable news down the road. You are young and an inspiration to all, Thankyou for your courage and posts, Bill and family
Thank you for posting! Love, JoAnne
Oh Judy, I can`t tell you how sorry I was to see this news
You`ve been a real trooper and have always managed to stay cheerful and carry on being supportive to others here, despite having such a rough time yourself on tx. You know you gave it your very best shot, stay strong and positive... your time will come.
Wishing you all the very best, and don`t forget we`re all here for you. Big hug from Jill xxx
Really sorry to hear this, Judy - you did all that you possibly could. You have a great attitude and can take some comfort in knowing that things are rapidly moving forward in the development of much less toxic treatments
Much Love Steff xx
Your liver got a break, and newer less toxic treatments are coming out...Big Hugs for you!!!!!!!
Judy, my heart goes out to you. You deserved a better result with all the Sx you had to go through. You're a youngster, your liver's had a break, so relax until something less toxic comes along. You'll make it next time. Hugs XX
Judy,
I am so sorry to hear this. As you know, I am in the same boat, having halted tx at 16 weeks so I'm anticipating doing treatment with one of the upcoming "pill only" regimens; no interferon for me-thankfully.
Got my results from 12-week-post today and it's no longer Und. I now have a viral load of 1.4 million. I know a few of us have had the same news, lately. (Also, I was only able to complete 23 weeks of tx, and was supposed to go 48 but body shut down.) Sure I'm disappointed as that tx was the most difficult thing ever, but I won't let it get me down. I know all of our livers get a huge break while on tx; you can see it in our AST and ALT levels, amongst other things. I'll just continue to be good to my liver and wait 2 - 4 years, however long it takes for the interferon-free txs that are currently in trials. I'm OK, knowing I did everything I could. It just wasn't meant to be, this time around. The good thing is that I'm seeing a lot more SVRs than relapses on here, so don't let it get you down if you're awaiting results right now. Hugs to all.
Crap........is all I can say.
You went above and beyond what most people would have done. You should be proud of your effort. I know I am.
"For us, there is only the trying. The rest is not our business." T.S. Elliot
-- Edited by JIme on Tuesday 6th of November 2012 10:38:50 AM