Aa
Anyone do 72 weeks
I AM IB AND AM ON PAGASYS AND RIBO FOR 28 WEEKS NOW. i HAVE BECOME uD SINCE WEEKS 18 BUT BEGAN AT A LOWER DOSE BECAUSE OF MY WEIGHT AND SIZE. i WAS TOLD i WILL DO 72 WEEKS AND WONDER HOW YOU DID AS THE WEEKS WENT ON? dID IT GET BETTER WITH THE SIDES OR WORSE? i SEEM TO BE GETTING ALL THE SIDES NOW. mY WBC IS NOW THE NEXT NIGHTMARE TO DEAL WITH AND MY HAIR IS JUST STARTING TO FALL. i AM ON PROCRIT FOR THE RBC. dO YOU THINKSTAYING ON LONGER WILL KEEP THE THE sVR?
CASSEY28
CASSEY28
yes, I'm on wk 78 now...it can be done. new studies showed almost the same SVR with ex tx as EVR's has w/shorter tx. So being late to go UND doesn't mean you can't SVR like once thought.
it's different for everybody...I had a pretty rough spot at month 1, month 5, and 10-11 ..mo... everyones different but I think the winter and holidays make it harder. One day at a time...that all that you can do.
there were times I thought I'll never make it through this...but somehow...now I'm here...
and this was my best shot at not needing a transplant and surviving, at stage 3.4....so there was motivation to just do it. You need that...you need to be able to focus on your goal.
mb
it's different for everybody...I had a pretty rough spot at month 1, month 5, and 10-11 ..mo... everyones different but I think the winter and holidays make it harder. One day at a time...that all that you can do.
there were times I thought I'll never make it through this...but somehow...now I'm here...
and this was my best shot at not needing a transplant and surviving, at stage 3.4....so there was motivation to just do it. You need that...you need to be able to focus on your goal.
mb
I did 72 weeks starting all the way back in 2005. Was not UND until between weeks 12 and 24. I have been cured for over two years now.
Once you are on treatment things seem to become a way of life and while it feels like it will never end - it will. I got a bit depressed after week 48 because I was just sick and tired of feeling so sick and tired. But you just gotta hang in there and keep going. Remember it WILL end one day and the increase in odds in your favor is certainly worth it.
I do not understand what you mean you were given less meds because of your weight - the ribavirin should be weight based ..... if they did give you less than you were supposed to take it definitely could be why you did not respond quickly enough. It is crucial to have enough meds for them to do the job - no matter WHAT you weigh.
How much do they have you on? Is this doctor a heptologist with experience treating lots of hepc patients? At least they do know about the week 72 - many of the docs out there don't and that is such a shame because it WORKS. (Well at least it sure did for me).
Good luck, hang in there do NOT give up!
Once you are on treatment things seem to become a way of life and while it feels like it will never end - it will. I got a bit depressed after week 48 because I was just sick and tired of feeling so sick and tired. But you just gotta hang in there and keep going. Remember it WILL end one day and the increase in odds in your favor is certainly worth it.
I do not understand what you mean you were given less meds because of your weight - the ribavirin should be weight based ..... if they did give you less than you were supposed to take it definitely could be why you did not respond quickly enough. It is crucial to have enough meds for them to do the job - no matter WHAT you weigh.
How much do they have you on? Is this doctor a heptologist with experience treating lots of hepc patients? At least they do know about the week 72 - many of the docs out there don't and that is such a shame because it WORKS. (Well at least it sure did for me).
Good luck, hang in there do NOT give up!
Cassey posted back in May of 08. Hopefully she made the right decision and went on to UND. Just to add to your posts Mouse and Marc, 53 of 72 and my old a-s-s is definitely dragging. It becomes surreal. I don't want to do this anymore. I'm so over it and yes it can be done and yes I will finish but now I understand why 48 wks is the standard duration because after that the body and the mind aren't giving back what we are taking from it every week. It's tough as hell and for anyone that's doing 72 wks get your game face on cause your going to need it big time.
Not to say all those who tx 24 or 48 wks don't have it rough. I know you do for sure.
Trinity
Not to say all those who tx 24 or 48 wks don't have it rough. I know you do for sure.
Trinity
I'm on week 62 of 72 (and counting!) but I don't think my side effects have been as serious as yours. I never needed to be on Procrit, for example. It is true that over time my side effects got a little more manageable but I don't know if that is predictable for you.
I think you seriously need to consider whether it is worth continuing this treatment for almost another year or whether it makes more sense to stop treatment now, regroup, and try to get into a trial with the newer drugs. A lot of that will depend on your current level of liver damage, which you don't mention. Are you someplace where it would be possible to get a second opinion from another hepatologist who treats HCV? If so, I think that would be wise. It is no picnic treating for 72 weeks, and you don't want to risk long term damage to your system. OTOH given when you cleared its the only way with the current drug regimen to raise your chances of success.
Good luck.
I think you seriously need to consider whether it is worth continuing this treatment for almost another year or whether it makes more sense to stop treatment now, regroup, and try to get into a trial with the newer drugs. A lot of that will depend on your current level of liver damage, which you don't mention. Are you someplace where it would be possible to get a second opinion from another hepatologist who treats HCV? If so, I think that would be wise. It is no picnic treating for 72 weeks, and you don't want to risk long term damage to your system. OTOH given when you cleared its the only way with the current drug regimen to raise your chances of success.
Good luck.
I am in week 68 of 72. I'll be finishing on 4/21. Compared to the 48 week protocol that I had already done, the only difference I see is that your *** drags behind you a whole lot loner.
72 is very hard but it can me done.
Mouse
72 is very hard but it can me done.
Mouse
There is a 72 week "club" here... LOL!
Check with Susan400 - Andiamo1 and quite a few more folks have been there - done that.
The sides are difficult for some - and for me.. they went in a merry-go-round effect... One day felt this way ---- next day felt that... It was exhaustive at times.
But made it through - and I did the 24 weeks - so I was VERY lucky - I don't think I could have been strong enough to do 48 or 72 weeks - you folks are just simply AMAZING!!!!!
Anyhow - hoping you start to feel better - and also hoping you get a chance to stick around here - this is a GREAT forum....
Great people - great information!
Meki
Check with Susan400 - Andiamo1 and quite a few more folks have been there - done that.
The sides are difficult for some - and for me.. they went in a merry-go-round effect... One day felt this way ---- next day felt that... It was exhaustive at times.
But made it through - and I did the 24 weeks - so I was VERY lucky - I don't think I could have been strong enough to do 48 or 72 weeks - you folks are just simply AMAZING!!!!!
Anyhow - hoping you start to feel better - and also hoping you get a chance to stick around here - this is a GREAT forum....
Great people - great information!
Meki
I can't speak to the 72 weeks experience, but here is the scientific data for "slow responders"...Summary: Staying on tx for 72 weeks will give you a better chance of achieving SVR...
"15% of genotype 1 patients achieve undetectable HCV RNA between Week 12 and 24 of treatment and have been referred to as “slow to respond.”
"It is critically important to recognize the point at which a patient achieves undetectable HCV RNA during treatment as this is directly related to the likelihood of achieving a SVR.[7] In other words, the later a patient achieves undetectable HCV RNA during treatment, the higher the likelihood that the patient will relapse after treatment is discontinued following the standard duration of therapy (24 weeks for genotypes 2/3 and 48 weeks for genotype 1).[7] Three recent studies have now demonstrated that relapse can be significantly reduced in slow-to-respond genotype 1 patients—those who achieve undetectable HCV RNA after Week 12—by extending the duration of treatment from 48 to 72 weeks.[8-10,20] In each of these studies, the relapse rate was reduced from more than 50% to less than 20%. Two of these studies suggest that this benefit may be less or nonexistent in patients with higher HCV RNA levels at baseline and at Week 12.[8,9] However, these observations will need to be confirmed in future studies before these patients are not considered for treatment extension. Therefore, for now it appears that prolonging the duration of therapy will increase SVR rates in patients who are slow to respond and should be routinely practiced".
7. Ferenci P, Fried MW, Shiffman ML, et al. Predicting sustained virological responses in chronic hepatitis C patients treated with peginterferon alfa 2a (40 KD)/ribavirin. J Hepatol. 2005;43:425-433.
8. Sanchez Tapias JM, Diago M, Escartìin P, et al. Peginterferon alfa2a plus ribavirin for 48 versus 72 weeks in patients with detectable hepatitis C virus RNA at week 4 of treatment. Gastroenterology. 2006;131:451 460.
9. Berg T, von Wagner M, Nasser S, et al. Extended treatment duration for hepatitis C virus type 1: comparing 48 versus 72 weeks of peginterferon alfa 2a plus ribavirin. Gastroenterology. 2006;130:1086 1097.
10. Sanchez-Tapias JM, Ferenci P, Diago M, et al. How can we identify HCV genotype 1 patients who may benefit from an extended treatment duration with peginterferon alfa-2a (40KD) plus RBV? Program and abstracts of the 42nd Annual Meeting of the European Association for the Study of the Liver; April 11-15, 2007; Barcelona, Spain. Abstract 641.
20. Ferenci P, Laferl H, Scherzer TM, et al. Customizing treatment with peginterferon alfa-2a (40KD) (Pegasys) plus ribavirin (Copegus) in patients with HCV genotype 1 or 4 infection: interim results of a prospective randomized trial. Program and abstracts of the 2006 Annual Meeting of the American Association for the Study of Liver Diseases; October 27-31, 2006; Boston, Massachusetts. Abstract 390
Best of luck with your treatment!
Hector
"15% of genotype 1 patients achieve undetectable HCV RNA between Week 12 and 24 of treatment and have been referred to as “slow to respond.”
"It is critically important to recognize the point at which a patient achieves undetectable HCV RNA during treatment as this is directly related to the likelihood of achieving a SVR.[7] In other words, the later a patient achieves undetectable HCV RNA during treatment, the higher the likelihood that the patient will relapse after treatment is discontinued following the standard duration of therapy (24 weeks for genotypes 2/3 and 48 weeks for genotype 1).[7] Three recent studies have now demonstrated that relapse can be significantly reduced in slow-to-respond genotype 1 patients—those who achieve undetectable HCV RNA after Week 12—by extending the duration of treatment from 48 to 72 weeks.[8-10,20] In each of these studies, the relapse rate was reduced from more than 50% to less than 20%. Two of these studies suggest that this benefit may be less or nonexistent in patients with higher HCV RNA levels at baseline and at Week 12.[8,9] However, these observations will need to be confirmed in future studies before these patients are not considered for treatment extension. Therefore, for now it appears that prolonging the duration of therapy will increase SVR rates in patients who are slow to respond and should be routinely practiced".
7. Ferenci P, Fried MW, Shiffman ML, et al. Predicting sustained virological responses in chronic hepatitis C patients treated with peginterferon alfa 2a (40 KD)/ribavirin. J Hepatol. 2005;43:425-433.
8. Sanchez Tapias JM, Diago M, Escartìin P, et al. Peginterferon alfa2a plus ribavirin for 48 versus 72 weeks in patients with detectable hepatitis C virus RNA at week 4 of treatment. Gastroenterology. 2006;131:451 460.
9. Berg T, von Wagner M, Nasser S, et al. Extended treatment duration for hepatitis C virus type 1: comparing 48 versus 72 weeks of peginterferon alfa 2a plus ribavirin. Gastroenterology. 2006;130:1086 1097.
10. Sanchez-Tapias JM, Ferenci P, Diago M, et al. How can we identify HCV genotype 1 patients who may benefit from an extended treatment duration with peginterferon alfa-2a (40KD) plus RBV? Program and abstracts of the 42nd Annual Meeting of the European Association for the Study of the Liver; April 11-15, 2007; Barcelona, Spain. Abstract 641.
20. Ferenci P, Laferl H, Scherzer TM, et al. Customizing treatment with peginterferon alfa-2a (40KD) (Pegasys) plus ribavirin (Copegus) in patients with HCV genotype 1 or 4 infection: interim results of a prospective randomized trial. Program and abstracts of the 2006 Annual Meeting of the American Association for the Study of Liver Diseases; October 27-31, 2006; Boston, Massachusetts. Abstract 390
Best of luck with your treatment!
Hector
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