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HCV ANONYMOUS
Side Effects of Therapy
TREATMENT ISSUES
(Moderators:
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negative1
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treatment duration
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Topic: treatment duration (Read 2604 times)
bandman
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treatment duration
«
on:
June 28, 2008, 05:55:34 PM »
I was recently diagnosed with hcv and was told I would undergo treatment and was wondering about the duriation of tx and why...
I remember my nurse saying something about 12 weeks and if something did not happen by then , then we stop.
But I have also read about patients enduring tx for much longer.
I have genotype 1 and was wondering why she wants to quit if she does not see a change in 12 weeks , that seems like an awfully short time ... how can she tell if the treatment is working.
Why is treatment for genotypes 2 and 3 even shorter?
Why do some people have to take treatment for 72 weeks?
Also, where can you learn how to interpret lab work, what should I look for... I told her I wanted copies of all of my blood work and she said that was no problem.
thanks!
bandman
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negative1
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Let me think on that a bit
Re: treatment duration
«
Reply #1 on:
June 28, 2008, 06:34:09 PM »
Bandman....
Jusr post your test results here and there are a lot of people, like Missy, Willy and others that really know what the heck they are talking about.
Earl
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you may know somebody in a similar
situation, or you may be in a similar situation, and if your in a
situation like that there's only one thing you can do and that's walk into
the shrink wherever you are ,just walk in say "Shrink, You can get
anything you want, at Alice's restaurant.". A. Guthri
DougV
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Re: treatment duration
«
Reply #2 on:
June 29, 2008, 05:37:18 AM »
Hey Bandman,
There unfortunately are few clear cut reasons.
Geno 2 and 3, for whatever reason, respond much better to treatment then do Geno 1 and 4. So not only is treatment much shorter, but success rates are much higher.
Standard tx time for Geno 1, such as yourself, is 48 weeks. The early milestones in labwork are 4 and 12 weeks. The sooner the virus shows undetectable the better the chance for success. At 12 weeks there are several possibilites. The first is that your virus levels do not show a minimum of a two log drop (remove two zeros from your pre-tx VL) in which case you will be taken off treatment as a non-responder. Next possibility is that you show no detectable levels of virus in your blood. Cool, treatment will be 48 weeks and you have a pretty decent chance of success. Third possibility is that virus is still detectable but you have had a two log drop. This is the gray area of treatment duration. Some docs will keep watching out for VL drop and if by week 24 it is undetectable then they will stick to 48 weeks, some more agressive docs will bump you up to 60 or 72 weeks at this point. However as 72 weeks is not FDA approved some insurance companies will balk. If by week 24 you still are detectable then here again you would be considered a non-responder and take off tx.
Finally lab work and what to look for. You mainly want to watch for VL (viral load), red cell, white cell, and platelet counts as well as liver enzymes. Those are the areas most likely to be impacted by tx.
Good idea to keep copies, it lets you track progress.
Hope that answered everything.
Doug
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Diagnosed 10/04 1a 3/3
Round 1 2005 48wk Pegintron Relapsed
Round 2 2007-08 39wk Infergen Relapse
9/26/08 Diag. Stage 4
Round 3 Pegasus/Riba/Incivik 6/25/11 -
MissyMouse
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Re: treatment duration
«
Reply #3 on:
June 29, 2008, 06:47:18 AM »
Hi bandman,
That DougV is sooooo smart. I agree with everything he told you on treatment duration.
I just wanted to add that in my case, I am a geno 1a with Stage 3/4 liver damage (on a scale of 4). I did 48 weeks of treatment from May, 2006 through April of 2007 and found out in September, 2007 that I relapsed. I am currently on my second round of treatment and am doing 72 weeks this time. Hence, another reason for extended treatment would be if you are considered a relapser. Doug is also correct that the extended treatments are not FDA approved and that some insurance companies will indeed get pissy about it.
Mouse
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1a, Stage 4, cirrhosis
Round 1: 48 weeks from 5/19/06 - 4/13/07
Relapsed 9/24/07
Round 2: 72 weeks from 12/11/07 - 4/21/09
Relapsed 5/27/2009
Round 3: 48 weeks from 12/2/2009 - 10/27/10
Third time's a charm ... SVR BABY!!!!
bandman
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Re: treatment duration
«
Reply #4 on:
June 29, 2008, 05:52:23 PM »
Thanks Doug, Mouse and Earl,
I am supposed to start with my first shot on july 4.
But i will believe it when I see it... I have been waiting about 6 weeks(from first time I said "lets do this") for everything to come together.
bandman
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Hank's mom
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"It ain't braggin' if you done it." - Dizzy Dean
Re: treatment duration
«
Reply #5 on:
June 29, 2008, 10:15:34 PM »
Hi bandman -
Missy and Doug are on the spot with their input. The only thing I can add is from my own experience. I started July 2, 2006 - at the 12 week test my load had not dropped significantly enough to remain on that course - Peg. Interferon/i shot per week/ 2 riba a.m. 2riba p.m.. At that time I as given a choice to get more aggressive or maintenance only till something new came along. I went with the aggressive Infergen daily shots with the same dosing of riba. This too failed to give me the necessary drop. I was taken off that and went on maintenance of 1 shot pegintron/low dose/no riba - I only lasted 3 weeks on that. Ihad some serious psychiatric issues by then so the stop was necessary. I'm what is called a non responder.
Since then I have regained my overall health, though my liver became compromised so I am on the transplant list. My viral load hasn't leap-frogged though I remain careful through diet and am building up to low impact fitness routines. My mental state is also back to normal - though it took some meds and therapy to help me get here.
At any rate, the duration does depend on your response and is or can be very different for treaters. I wish you all the luck for an easy and successful run. Don't seat it till you have to - I never did because the stress was going to help anyway. I also hope you don't have to wait too long - so frustrating.
Be well and nice to meet you,
Susie
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"Find out who's the Victim. If you can't tell, it's you." –Yardley
"… One hand full with quietness, beats two hands full of vexation of spirit" – Amarillo Slim
Both referring to the game of poker.
bandman
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Re: treatment duration
«
Reply #6 on:
June 30, 2008, 05:39:35 AM »
Thanks mom!
bandman
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Rainbow
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Re: treatment duration
«
Reply #7 on:
June 30, 2008, 06:59:20 AM »
Susie...
Why did they put you on only 800mg of Riba?
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pete c
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Re: treatment duration
«
Reply #8 on:
June 30, 2008, 06:33:06 PM »
HI Bandman
Just want to welcome you here ,and on a very selfish side at lest i will have someone as long as me.Heck even missy should be done befor me, You hang in there man .this is very doable.iam geno type 3a with early stage cirrhous,just startd TX 2 weeks ago , hope all is well for you my friend.doug and missy and sussie they will help you with any questions you may have .
pete
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Geno type 3a cirrhosis of the liver undi at 12weeks& 24,48.
can,t always get what you want, but you always get what you need. stay true to thine own self.
Hank's mom
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"It ain't braggin' if you done it." - Dizzy Dean
Re: treatment duration
«
Reply #9 on:
June 30, 2008, 06:43:46 PM »
Rainbow -
I think the dose was based on my size and condition. I was only 104 when I started, already was anemic, had extremely low platelets, and after back surgery and kidney stone issues had me very weakened in general, so higher doses were out of the question.
I truly think an increased dose would have cured the life right out of me and even then I would be a dead woman with hep c. I did ask if that would help me clear when the dose i was on didn't do the trick, but was told that no, in my case it was ill-advised.
Be well,
Susie
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"Find out who's the Victim. If you can't tell, it's you." –Yardley
"… One hand full with quietness, beats two hands full of vexation of spirit" – Amarillo Slim
Both referring to the game of poker.
bandman
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Posts: 12
Re: treatment duration
«
Reply #10 on:
June 30, 2008, 06:44:05 PM »
hey pete!
thanks for the welcome!
I have heard good things about this site.
I have mimimal liver damage... 1 and 1-2, I think is what the test indicated.. so I am hopeful that treatment will be successful.
bandman
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Pancho and Lefty
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distant relatives
Re: treatment duration
«
Reply #11 on:
June 30, 2008, 09:45:39 PM »
bm,
Welcome to the Magical Mystery Tour. Waiting a long time to start apparently isn't unusual. I waited five months and Pete waited almost a year.
Seems like there's a difference of opinion about how much is good to know about hep, tx, the sides, etc.
Many here have a lot of experience with hep and tx and are willing to share .. . . depending on your skills and preferences, you may want to do your own research as well.
Just about anyone here has a boatload of bookmarks relating to virus and tx.
Mouse started the Treatment Diaries and many of us doing tx post to it. There's always another place at the table. I think it's an interesting read from start to finish. . . as no one has deleted the uncomplimentary old posts.
You see us at our best and not so best.
buckle up brother
Max
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geno 3A--24 wk tx--SVR
"Love is just a song we sing. . . fear's the way we die. . . . "
Rainbow
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Re: treatment duration
«
Reply #12 on:
June 30, 2008, 10:46:25 PM »
Susie:
I see.....then it was the right call. I've seen people with the same scenario start with Riba 400mg daily...then slowly increase it. Doing that is supposed to help so that the platelets won't drop too low.
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sharasmile
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Re: treatment duration
«
Reply #13 on:
July 01, 2008, 03:28:56 AM »
WELCOME BANDMAN
YOU SURE PICKED THE RIGHT PLACE TO GET ANSWERS...EVERYONE HERE HAS HAD DIFFERENT RESPONSES TO TX..
SOOO.. ANYTIME YOU HAVE A QUESTION I'M SURE SOMEONE WILL HAVE AN ANSWER
THEY SEEM TO BE SOME OF THE MOST CARING PEOPLE YOU COULD EVER WANT TO CHAT WITH
MY SITUATION IS A LOT LIKE SUSIE'S I'VE HAD TO BATTLE THE PLATELET ISSUE SINCE I STARTED..
WE ALSO HAVE A CHAT ROOM ON WED. AND SUNDAY NIGHTS FROM 7:30-11 PM ET PLZ COME JOIN US IT WILL SURELY ENLIGHTEN YOU AND HELP YOU THROUGH THOSE TOUGH TIMES AHEAD ...
MAX IS RIGHT BUCKLE UP FOR THE RIDE IS JUST BEGINNING TO START
I PUT A QUARTER IN THE ROLLER COASTER RIDE AND NOW I JUST CAN'T TURN IT OFF...LOL
TAKE CARE AND GOOD LUCK ON TH 4TH..
SHARASMILE
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LIFE IS A BOX OF CHOCOLATES YOU NEVER KNOW WHAT YOU MAY GET
bandman
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Re: treatment duration
«
Reply #14 on:
July 01, 2008, 06:25:15 PM »
Thanks sharasmile,
I am really concerned about starting so late in the summer as I am a teacher and a musician...
I have two shows coming up at the end of the summer... one is four straight weekends, and one runs a week every night,
then school starts on Aug. 15.
I am teaching teenage boys , so it really takes a lot of energy to keep 'em engaged.
but I guess I should just take one day at a time and not be such a nervous nellie!
bandman
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