Week 12 Question

[scaredwife]

Yesterday the PA told my husband that if he wasn't clear at 12 weeks, he wouldn't achieve SVR and he had never seen anyone that had. So I said then why continue tx if that's the case? He said that's a good question, but there is some benefit for the liver because tx gives it a chance to repair and moves back the hands of time. I know there are people on this board who have achieved SVR and did not go UND until after week 12.

[ejoli]

  I have learned alot from reading your posts....I can't believe that you kept such a detailed record of so many people. I can hardly remember names let alone #'s!  
                Here goes:  week 39 of 48
                                  geno  1a
                                  beginning VL 777,000
                                  grade 3 stage 4 biopsy
                                  undetectable week 12(1st test)
                                  undetectable week 24 and 36
                                                     Thanks friole!    -Libby
                                  

[BThompson4]

Sincebirth was und at week 28 and is in week 71.

http://www.hepcukforum.org/phpBB2/viewtopic.php?t=5670&sid=3584621664e7548cc7651b5bd8b025ab

Post Posted: Sun May 27, 2007 6:03 pm  

I am on week 71 of treatment. I can tell you that the last 24 weeks is a lot harder on your body than the first 48. I have really deteriorated in the last 12 weeks or so.

Good luck

[willing]

just wanted to express my appreciation for your fine record keeping! I've long thought that a very valuable service a site like this could provide is to serve as  an open-access patient registry where patients could contribute their treatment data (everything from VL to Hgb), have it vetted for accuracy, and share in the insight obtained from the accumulating collective experience. All treatment data is currently treated as proprietary, usually held by the drug companies, and not shared (I've tried), which limits analysis to the summaries they choose to publish. Really this is a sort of call to "lab rats of the world, unite!", but in the absence of an organized structure, I believe what you're doing is very valuable.

A couple of additions - I don't actually know my w/12 VL was ~400: it was an UND on a<600 test. I didn't yet know about heptimax etc. and about the critical importance of high sensitivity w12 tests (independently of their, emerging,  value at other points in tx..) - and the 400 number is a guess I extrapolated from my vl curve. Also, there a number of people MikeSimon, DD and Ina, among them who did far more than 72 and SVR'd, though I don't recall their w12 status.

[friole]

Hi proactive - I put you down on my little list.  It is amazing the impact of merely a few virons at week 12. It is dreadful to think of 72 weeks, but it may be prudent.  The Berg study does help, doesn't it.
frijole

[Proactive]

My thinking says, doing 54 weeks is dreadful, so whats another 18 on top of that!!!  Combined with the higher dose riba I'm doing (33% above weight based)
I'll at least sleep at night knowing I gave it my best shot..My doc is aggresive, so hopefully I can get him onboard with my thinking (g). If not, well we'll cross that bridge when we come to it..
My sides are tolerable, mainly the double F, fatigue and fog (g), and the minor ones, hair loss, small amount of rash etc.

[Proactive]

my base vl was 2,440,000

[Proactive]

guess you can add me to your list, although my 12 week pcr was closer to the 13th week (vl 256)..My base was 1,440,000, 4 week pcr (vl 52,000), 8 weeks(vl 2,000), cleared sometime before 17 1/2  weeks..treatment ongoing, pushing for 72 weeks.
Proactive

[friole]

I wish I could construct some kind of spreadsheet that would be accessable to everyone and had all the info that was pertinent.  There was one done some time ago but the info gets so outdated and usually it just brings more questions.  Like the people who did not clear who were clear at week 12 - well, then you have to question the sensitivity of the test.  I would have shown as clear had I let the doctor use the test he normally uses which only goes to 50.

Thompson - sounds like you are doing everything humanly possible for your new liver.  We all just have to stay a little ahead of the curve

[friole]

You know, it is just a cr@p shoot.  He can go 36 weeks after clearing.  That is what I did BUT I relapsed.  Who knows if I would have cleared after 72 weeks.  The thing is there are some studies out -- like the above mentioned Berg study and the Tapias Sanchez study.  Those studies compare 48 weeks with 72 weeks.  There are no studies on 36 weeks after clearing.  The only thing I have read is called the Drusano Model and it was put together mathematically, not based on studies.  I wish I never read it.

The fact that your husband does not have damage (meaning scarring)  is great. His viral load has reduced re3markably.   But you said moderate inflammation and that indicates a grade 1 or 2 and as long as that inflammation continues scarring will come if the virus remains.  Sooner or later - no one knows.

Believe me, when I was not clear at 12 weeks, extending was the last thing I wanted to think about.  I never anticipated not clearing.  I just did a lot of reading, and I think that is what you and your husband need to do too.  In my opinion, if you can increase your odds, it is to your advantage to do so.   As far as waiting until kinder medications come out -- well, I guess that is what  I am doing now, but very reluctantly; there are other things to consider when deciding to extend

You have plenty of time to make this decision and it is a really hard one.  Good luck with it.
frijole

[scaredwife]

BTW, he is geno 1b.

[scaredwife]

He had no liver damage, but moderate inflamation so it was only a matter of time and he's not getting any younger (56).  He's dropped from baseline of 8,200,000 to 4240 @ week 10. I think that's a 3 log drop. So, if he not undetectable @ week 12, but goes undetectable shortly thereafter, is it still possible to achieve svr? Why do you have to treat an additional 24 weeks after 48. Why can't you just extend the tx 36 weeks from the undetectable week? Sorry for all the questions, but this is all very confusing stuff.

[antman]

interesting list. my Dr. never even implied i should quit at 12 weeks with a vl of 55. let's face it there is 0% chance of svr is one stops. i'll take whatever odds there are and go forward. the other thing to consider is how well one is tolerating the meds. so far, i'm doing well and my labs confirm it. the only way i would pull the plug on tx is if there was no or little response @ 12 weeks. but like everything else regarding tx, it's between you and your Dr.

[BThompson4]

Great post!

Update on me.  Take shot 48 of 72 tomorrow.  Cleared between weeks 20 and 22.  Eleven UND pcr's since then (I get them every two weeks, probably because post transplant).  Doing great all things considered.

Scary to think so many can be UND by week 12 and relapse.  My hepatologist said last visit that some doctors are advocating fifty weeks of treatment past UND for geno 1's with factors against them.

I have a bunch of negative factors, so extending (after reading this board) was an easy decision.  Gen 1a, high viral load (over 3.5 million), take 50 units of Lantus each day, post-transplant, about 25 pounds overweight at tx start (have since lost 15 pounds), age 51.  F2 fibrosis a year prior to beginning treatment; at week 36 had biopsy which showed "no significant fibrosis" (between zero and F1 fibrosis), so ecstatic about that.

Look forward to more updates from people on your great list.  Thanks again!

[jmjm530]

Your doctor isn't exactly correct, but it is true that if you aren't clear by week 12 that your chances of being cured drop, and that you would require extended treatment which would mean 72 weeks if your husband was a genotype 1. For this reason, I agree with "Copyman" above, that if your husband is stage 2 or below, stopping treatment at week 12 is a very reasonable decision, assuming he still has detectible virus. I just can't see advising anyone to take these toxic drugs for 72 weeks unless they have significant liver damage. BTW there are no doctors here so everything you read are opinions by those who are somewhere in the treatment process.

-- Jim

[nygirl7]

It sure sure SURE looks to ME like the 72 is a TREMENDOUS help in gainning SVR reading our little list.

Thanks Friole - that is one of themost interesting things I've read on this forum, ever. I'm so glad you kept the list going.

You really ARE the best you see!

[FlGuy]

G3a, und at 12,  went 24 weeks and relapsed.  My greatest errors were 1) not weight-based riba and 2) not haveing a sooner pcr than 12.  All that, plus more, addressed in current tx#2.

[friole]

answer to your question from 2 days ago....

Strator -- VL at wk 12 - 291,000   -- relapse (did about 46 wks)
NYgirl  -- VL at wk 12  -491   --- clear but with 72 weeks
Cuteus  --VL at wk 12 -- about 2000 -- SVR but with 72 weeks
52Tele -- VL at 12 wks -- 304 -- relapse
Friole (me) -- VL at 12 -- 40 -- relapse (did 56)
Jeralice -- VL at 12 -- 40 -- relapse & retreating (the reason I extended)
Jaroman -- VL at 12, not clear and up at 24 weeks, doubled peg, did 72,
                          and is clear
Avidreader - VL at 12 --20 -- SVR with 52 weeks
My BCBS caseworker --  detectable VL at 12 weeks - -- SVR with 48 weeks
Grandoak -- very detectable at 12 weeks -- relapse
Willing - VL at week 12 - about 400 -- relapse (did 48)
Sailinglady's hubby - detectable at 12 weeks, did 48 - relapse


Others still treating or just finishing...

bthompson4 -- vl at week 12 - 561  -- extended treatment
fishdoc -- vl at wk 12 - 38,700 -- did 60 weeks (I think) has not had post PCR yet                  
candoman VL at wk 12 - in the thousands, -- just finished 72 and is on
                       maintenance dose
Valtod-- VL at 12 -- 647 ---- still treating , doing 72
antman - VL at 12 --55
zazzA -- vl AT 12 - detectible under 30, I think

These people were clear at week 12 but relapsed!!!
2Irish
MrsOkert
MisterBeagleBailey
Timedog

These people had detetable virus at week 12 but I don't know what happened

rockerforlife
HCA  - had 606 at week 12
Fresnoborn - had 188
linthomas - had 1440
wonderingwhen - had 11,000
virtualsuzyq
airbourne -  had 275
cruelworld

I would like to see a lot more info if it is out there - please add to this
frijole

[friole]

This question is so critical and it still is not out there in the mainstream medical treatment.  The 12-week PCR should be a wake up call.  It does not mean that one can't clear, but it may mean that a new direction must be taken and, unfortunately, we may have to bring it up with the health care providers ourselves so we better get informed.  

The Berg study addresses a lot of issues with extending treatment but the part that is important to a lot of us is that when they extrapolate the data and just look at those not clear at 12 weeks with a VL of <6000 and clear at 24 weeks, they find that a greater percent clear with 72 weeks than 48 weeks.  17% more is sticking in my brain, but I have not read it recently.

Antman asks who has cleared with VL at 12 weeks doing the standard 48.  I used to keep notes while on treatment and I am going to put down what little info I have .

[nygirl7]

Well I can personally tell you that is BS with a capital B and a capital S.

Tell the PA to read the Berg Study and also the Sanchez-Tapias study.  These two studies, used together show that people who are NOT clear by week 12 but ARE clear by week 24 CAN achieve SVR and improve their chances by doing 72 weeks instead of 48.

That is what I did.  I am post treatment 4 months and I am UNDETECTIBLE.

So nananana to your hubby's PA!

Using OLD OUTDATED INFORMATION is not a good thing and THAT is what is going on.

Doctors (and their PAs) need to keep up with the CURRENT studies that are being done in order to better help their patients.  Unfortunately, many of them don't take the time to do so.

My own doctor didn't know any of this until I presented it to him. Then he sent me to one of the world's top docs (Dr. Ira Jacobson in NYC) who was the lead investigator on the Berg Study (and many others) and Dr. J. said - yes if you want to do everything you can to get SVR...you can do the 72 weeks.

It changes the odds from giving us more than a 50% chance of relapse down to only like 30%.  That was good news to me!

I did it and so far it's worked.

While most docs want a TWO LOG drop at week 12 - most will continue until you are CLEAR at 24.  If you are not, then they will take you off treatment because it's not working.

Please don't let this stupid PA discourage you guys.  There is MUCH knowledge on this board and presenting it to the doctor (not saying I heard on the internet, they don't like that at all) but by showing him copies of the studies...well my doctor now learned how CRUCIAL it is to keep up and he is.

Good luck!

[Susie2007]

Actually SOC states that a person must have a minimum of a 2 log drop at 12 weeks to be able to achieve SVR. No one with a 2 log or better drop at week 12 should stop treatment.

[copyman]

depends on how much liver damage he has. if stage 2 or less i would stop.