1b svr's??

[cgd914]

It seems we have had some bad news on some latest posts, which is so regretful.  Are there any 1b's willing to share there svr experience and stats?  Need some encouragement here!

I am 1b, 2/3, vl 1million  clear at 12 and 36 weeks.  7 more weeks to go.  Having alot of anxiety this leg jaunt!

[NYgirl]

I'm a 1A and a 1B wasn't clear at 4 weeks (411) or 12 (419) waiting for my results of the 24 week right now.

When all is said and done - it seems to me that mostly the 50/50 for 1s and 80% for 2s is I guess right.

Even if you don't clear the first time - or on the original plan look at those who HAVE gotten SVR because they didn't give up and they kept with it.  Anyone looking at a DoubleD can see that although it's rough - the results are worth going for.

Those people are my true heros.

[cgd914]

Boy talk about brainfog!  I meant to say this last jaunt not leg jaunt!  goodness!  

Nygirl thanks and best of luck, you seem to be a fighter!

[mikesimon]

Male 1b treated 3 times since July 2000. 1st TX was 48 weeks with low dose regular interferon and low dose ribavirin and didn't clear. 2nd TX was 52 weeks with Peg-Intron and 800 mg. ribavirin and cleared late and relapsed. Last TX consisted of 180 mcg. Pegasys and 1000 mg. ribavirin and I treated for 73 weeks. Undetectable at week 12 per Heptimax <5 IU/ML. Age at the beginning of last TX was 53 years and VL was 3.8 million. Liver transplant in June 2000. Stopped TX June 2004 and SVR today. Mike

[Docsgold]

1b, 221000 IU/mL (<100 reference range), Grade 2, Stage 1
female, 48 when started tx, peg-copeg (1000mg) for 48 weeks

12 week PCR undectected (<5 reference range)
3 month post tx undetected (qualitative)
9 month post tx undetected (qualitative)

I had a touch of every side effect during tx.  H&H stayed around 10 and 31 for most of tx so never needed procrit.  Took no ADs, and occasional ambien for sleep.  Lost my thyroid function from the tx.  Somehow I managed to work and finish an advanced degree during tx while my head spun around spewing green pea soup (that I remember).  :)  

Hang in there, it can be done.  My physician says I do not need another PCR, but I think I will get another when I am 18 months post so I can close this chapter of my life.  Best of luck to you.
SD

[Docsgold]

Oops a typo.  My VL was 2.2 million. I feel that every single of those little b@#$%^ds have been eradicated!

[cgd914]

40 year old female

[carpedi]

I'm female, age 64, 1b, stage 1,grade2, 122,000 pre tx. Was supposed to go 48 weeks, but stopped at 24 due to sides. 45 IU's at 4 weeks and clear at 12. Still clear at 26 and 32. Docs say at this point my chances of SVR are pretty good, but I'm sweating it 'til the 6 month mark.

[jmjm530]

Sounds like you have an excellent chance of SVR. Best indicator is that you're non-detectible 8 weeks post treatment which some suggest correlates with a 90% chance or better of SVR. Also, your very low pre-tx viral load and <50 IU/ml at week 4 are I believe the same criteria they used in the recent European short-course (24-week) directive for geno 1's. If I remember correctly, the qualifying short-course group also had a 90% SVR rate. Good luck with your 6-month PCR but it appears you already have it in the bag.

-- Jim

[Docsgold]

I hate to say it but I am about to waddle.  A very slow and steady weight gain (22#) since tx stopped and still don't smoke, so I got a double whammy there with the metabolism being slow.  I will see an endocrinologist in a couple of weeks in hopes he can get my thyroid straightened out.  I feel pretty good since these days.  Layla told me once she got her thyroid leveled out she dropped 6# without even thinking about it.  Anyhoo, I can think straight and function without gasping for breath.  

Once in awhile I stop by to see what is going on here, glad to 'see' ya and hear that life is treating you well.  Take care Chev.

Tx is so difficult and no one really understands how difficult it is except those of us who have been there.  Sometimes I look back and wonder how in the blue blazes I did it.  I wish this tx cured everyone without the sides and worked the first time.  Good luck to everyone.

[HCA]

I am 1a/1b,and take my last shot {48} on Monday.
I was 1.3m pre-tx
606 at 12 weeks
n/d at 24 and 36.
Don't ask why but I feel I shall relapse.
I'm not negative-I've treated four times since year 2000,and this is the first time I've tested undectable(<25).
I've studied the odds as much as anyone,and immersed myself in internet study.
I feel that all responders have a 50/50 chance of SVR-you either relapse or you don't-it's a lottery.
Yes ,we have had some relapse posts recently,but they are self selecting.
Most patients are not as well informed as the community contributing to this site.At my local support group I meet patients who don't know their geno-type from their personality type.
The point being that there are thousands of SVR's we never hear about and users of this forum do not represent patients as a whole-only patients who are not ignorant or in denial.
There are 1b's achieving SVR every day.

[kespr]

I know I posted my relapse a few treads ago but over the course of the last couple of weeks I thought a few good reports were coming in of people getting to svr. The good ones are the ones that keep me trying knowing that people do clear and I WILL BE THERE SOME DAY. Don't ever give up

[jmjm530]

Well, as a 1b, I certainly hope the problem isn't with 1b's, but to be honest it has crossed my mind.

I'm a 59 year old 1b, pre-tx 1.5 million, stage 3, clear at week 6.
Based on age and histology, decided to extend beyond 48 weeks and am now about to enter week 55. The doctors I've spoken to in this regard are somewhat divided with most recommending only 48-weeks based on my early viral response but others suggesting that my genotype, age and histology put me in a higher relapse group. Can't say I ain't sweating it out. LOL.

BTW, cgd, how old are you?

-- Jim

[beamishboy]

just wanted to jump in & offer vigorus agreemnt to all;reading last couple of days has really made me think about maximizing SVR...comments about diet & exrcise& keeping active w/ life&family-i am grateful for positive reinforcemnt! and i really mean that...I am taking steps to stay on THE PATH,but it's about a K-10 (whatevr they call tuff mountain climbs! )and it sure helps having Guides who have been there & done that! Not to mention the invaluable support,info,insights & humor of everyone on this forced march togethr--THANKS & GOODLUCK to ALL

[dyce]

Ha friend, how is life treatin ya today? I to have been thinking , how can I increase the odds of attaining svr. Started increasing my intake of raw veggies and fruit. Grapes have a good anti-oxidant effect and helps to flush toxins out of the ole body. I'm doing some suppliments, whey and n-acetyl cystene. This helps us maintain good glutithione levels in our systems, glutithine which is a natural liver anti-oxidant flushs toxins and is also clinically used for tylenole poisoning. Look at Rocker with his diet.He ahieved rvr.

Dyce

[madbyron]

1B infected in 76, diagnosed in 02. Initial vl was ~ 500,000. 2/2 on biopsy. Treated in 03 with 180 mcg pegasys weekly and 1000 mg ribavirin daily for 48 weeks, except for a brief peg reduction to 135 mcg due to neutropenia. Started Neupogen at week 16 or so and resumed standard peg dose. Undetectable at weeks 12, 24, 36 and 48 and at 6, 12 and 24 months post. I credit dose compliance with the result, particularly the Riba, which at my body weight of 63.5kg or 140lb throughout the year of treatment, amounted to 15.75mg/kg of body mass. I now weigh 175 lbs and feel better than I did at any time in the previous 30 years. My immune system wrecked my thyroid and gave me psoriasis, which is now gone, before tx. The thyroid, of course, did not recover.

Many other 1A&B SVRs, who evidently no longer frequent the board, have similar stories.

[madbyron]

I don't mean to suggest that other 1s who have not had the good fortune to achieve SVR are less than fully compliant in their dosing, but that of the controllable variables, this is an important one. Lucky genes, however, seem to make at least as big a difference.

[Pharaoh]

Wow!  There's a name I haven't seen for a while.  How are you, madbyron?  I guess I'm not the only one who still lurks on the site.



Began tx in September 2002, 1b, VL 750,000.  Peg-Intron and Ribaviron.  Double dose of Peg for first eight weeks, then standard dose.  1000 mg Ribaviron throughout tx.  Tested clear at weeks 2, 4, 12, 24.  Stopped tx after 42 weeks (36 weeks after testing clear).  Last week of tx, VL 750.  Two weeks post tx, VL 7,500.  Ten weeks post tx, clear.  Twelve weeks post tx, clear.  Six months post tx, clear.  Eight months post tx, clear. One year post tx, clear.  Two years post tx, clear.

[Andy Capp]

I'm geno 1 (don't know/care if a or b).  I had a VL of 1,380,000 IU/mg, stage 3, grade 3 when diagnosed in Oct of 2004.  Started 48-week combo treatment in Feb of 2005.  2 log drop at 4 weeks (6,700 IU/mg), undetectable at weeks 12, 24, 36, & 48. Finished on 26 January 2006. In my heart, I know that I'm going to beat this thing.  

I learned during treatment that the only thing that I have control over is my attitude.

Stay the course and remain positive.

Robert

[susan400]

I'm like NYgirl.  I'm a 1A/1B too.  I haven't yet obtained a clearance. This is my 8th attempt at it.

Susan400

[mikesimon]

Talk about a name for the past!!! It is so nice to see your name here again. In case I never thanked you for all the information you provided back in the day allow me to thank you now. You and a few others made my life a lot easier in the old days and I really appreciated it. Pop in once in a while why don't ya. Good luck Pharaoh. Mike

[cuteus]

lots of veterans making a quick visit, nice feeling! madbyron, pharaoh( I always forget it was you with the positive VL who cleared on your own post tx, like Daryl). I will make a note this time! glad to see your body battled the last of the remaining stubborn bugs.

HCA: couldn't you extend past 48 wks since you were not clear at wk 12? One of the presentations of a recent AASLD conference was on the higher relapse rate on detectables at wk 12. Some of them did not even know they were still detectable. Blood samples were re tested,  after they relapsed, with a more sensitive  test. THese folks were not really negative at wk 12 into tx.
Is there a reason you can't go a tad longer since you have relapsed before?

[honey11]

I don't think its just 1Bs relapsing,,,,,There is and has been 1As relapsed.  My dr told me at one time,,,,not much of a difference in A or B,,,,It was the big #1,,,We didn't want as geno lol

My hubby and I both former 1A's

Probably had from 70's,,,,,My viral load before starting tx was 8.5 Million
Mr. Honey was 630,000
his enzymes were high at time and mine have always been normal,,,,low normal.
No biopsies either one of us due to dumb dr we had in beginning!
Both cleared at 12 weeks,,,,continued on for 52 weeks!  That was the normal weeks that our dr had geno 1's go,,,,Why? Not sure but we did that and probably missed our meds maybe once or twice during the whole year,,,,,Never once skipped a shot.  I was put on procrit towards end of treatment for low hemo.

Robert said it well,,,,,Stay the course!  Use your tx time to get well,,,follow the schedule,,,,tiresome,,,,but you will get there!

[Pharaoh]

Mike, I've got to keep checking in to make sure you are still in one piece! Have you taken up skydiving yet? :) I'm flattered that you found my information searches worthwhile, but knowing that you were on your third round PLUS a transplant was truly inspirational to me.  I looked up the word "determination" in the dictionary and one of the definitions was "mikesimon".  


Chevy/Cuteus - Yep. Go figure.  Undetectable at week 2 and every check after that until after my last shot.  I was crushed and my doctor was flabbergasted.  It had to be a false positive, so we checked again just two weeks later.  Not only was it positive again, but the increase was what you would expect in two weeks.  I did not have a biopsy before I started tx, so I decided that since I had failed tx I would see exactly what the status of my liver was.  I waited ten more weeks to do the biopsy because I was busy moving and I was so bummed out about failing tx I just didn't want to think about it anymore.  When my doctor ordered the pre-biopsy bloodwork I asked him to order a PCR to see how high my VL had climbed and he thought that was a good idea.  Can you imagine how I felt when that PCR came back undetectable?  Well, I was happy and mad at the same time -- I was afraid to believe it.  So was my doctor, so he ordered another PCR.  It came back undetectable, too.  My doctor had never seen anything like it, so we tested again in two months -- clear again. Then again at the one year mark -- clear -- and again at two years -- clear.  Three years will be in June and I'll get tested again.  I believe it now, but there is still a tiny little bit of doubt hanging on.  If you could have been inside my head when I had two positives followed by two negatives in the three months AFTER my last shot, you'd understand the lingering doubt.  Oh, I almost forgot, the biopsy came back Grade 1, Stage 0.

I suppose it's possible that I got two false positives back-to-back and that I was really clear all along.  That would be the simplest explanation.  The other explanation, which is just a theory, says that there is an optimum effecacy level for the drugs that was realized, in my case, as the drugs receded from my body, which in turn caused the desirable bio-chemical reaction that rids the body of the virus.  That's an over-simplistic description of the theory, but I think you see the point.  Whether I was the victim of sloppy lab work or unwittingly identified a subject for future research, I don't know. In either case I have five consecutive PCRs done over the last two and a half years that are undetectable and I like that.

GT

[mikesimon]

No skydiving and I am seriously considering never riding my bikes again and even selling them both. I hate to give up motorcycles but it seems to me that the drivers out there are worse and worse every time I drive a car let alone a bike, so that might be it for Chopper Mike. I have to say that I haven't ever heard of anything like your story. I am thrilled that this incredible thing happened to you. It couldn't have happened to a nicer guy. And believe me, your research helped me immeasurably and it was you and a few others that are partly responsible for my determination and good outcome. So thanks again Pharaoh and stay well my old friend. Mike