72 week club

[Valtod]

Four months ago, when I was discussing with my GI extending treatment to 66 or 72 weeks, I told him that of all the people on this forum, who did 72  weeks, no one relapsed. Relying just on memory, I thought there were at least a dozen of cases that I can back up my claim with.

Now I've just searched the forum archives and I'm surprised to find only 3 people who did 72 weeks and can actually show 6-month post-Tx PCR for SVR: DoubleDose, Cuteus and Jaroman. Am I missing someone?

Anyway, here is a list of the 72 week club (nicks and end of Tx dates):
DoubleDose - 10/04/03
Cuteus - 11/15/04
Jaroman  - 10/06/06
NYgirl - 2/08/07
Sincebirth - 6/09/07
Bill1028 - 7/07/07
MustangShelly - 8/01/07
Kalio1 - 8/24/07
Valtod - 8/27/07
St. George - 9/07/07

And those on their way:
NYCMark - 66 of 72
BThompson4 - 63 of 72
Proactive - 45 of 72
zazza - 43 of 72
Wyntre9 - 37 of 72

Can you please correct and add to the list.

I'm not sure what exactly happened with Kalio1 and BThompson4. Also, Sincebirth (Darryl) never posted after the end of Tx. And Bill1028 did 76 weeks.

Please share your stories, stats, latest PCRs and post-Tx side effects!

For example, here's the story of DoubleDose:
http://www.medhelp.org/forums/hepatitis/messages/38781.html

Thanks,
Val

[zazza]

Updated list of Extenders:Tx completion date: results
(please copy and repaste-add/update any added info on the list)

DoubleDose - 10/04/03----cleared--svr
layla - 7/14/04 --- 71 weeks --- UND 3 months post
mikesimon - 15/06/04 ---cleared---svr
Cuteus - 11/15/04 --- cleared --- svr
Jaroman  - 10/06/06
NYgirl - 2/08/07 --cleared--svr
Randalee - 3/01/07
Sincebirth - 6/09/07 --Relapsed
Can-do-man - 07/20/07 --- relapsed - did 72+ weeks
Bill1028 - 7/07/07 - Relapsed - did 72 weeks + 4 week dose reduction
MustangShelly - 08/01/07 ---cleared -svr
Kalio1 - 08/24/07----cleared---svr
Valtod - 8/27/07
St. George - 9/07/07 --- relapsed
bobk                --------------relapsed
BThompson4---------relapsed
sldb (98 weeks) ----cleared svr
Lonestar823--- 8/8/06 --- did 73 weeks --- cleared ---svr
Tallahassee (98+ weeks of daily high dose Infergen + riba) --- cleared --- svr

Still treating..........update when completed please
NYCMark - 66 of 72  
Bill1954 - 51 of 72
Proactive - 45 of 72
zazza - 63 of 72 - will be done 03/26/08
Wyntre9  - 37 of 72
cruelworld - 37 of 72
drofi - 34 of 72
FloridaMouse - 6 of 72

[nygirl7]

There is no safer ammo at this time and there might not be for many years, if ever.  Thats the thing - with no guarantee that fibrosis won't turn to cirhosis that is a big "IF" involved.

Anyway everyone knows my opinion on treating for 72 IF you do not clear until between 12 and 24.   I'd say that doctors are beginning to agree that cutting the relapse rate down so tremendously is a huge IN FAVOR of doing it.  The more fibrosis you develop potentially the harder time to achieve SVR so it only makes sense.  Half is a LOT of percentage to drop dont you think?

If there was any drug in the pipeline that was coming close to fruition that was a safer ammo this would change my opinon but the fact is there isn't any.  

The government needs to realize they are leaving an awful lot of people out here in the rain without pretty little bows to make us feel any better (thanks Deb_c for putting that into my mind!).

[jmjm530]

I think we're pretty much in agreement here. Just trying to make the point that extension to 72 weeks is only one of two reasonable options at week 12 for some of us. The other is to stop, re-group, and perhaps fight again, another day, with better, safer ammo.

-- Jim

[willing]

I found that japanese 72 week study from the last aasld;  see abstract 1321, "Comparison of standard vs extended pegylated interferon plus ribavirin treatment according to the time of HCV RNA negative in patients with genotype 1 and high viral load." from Ide et al. There's a copy here if you scroll to it and there might be a standalone version somewhere:
http://www.hcvadvocate.org/news/reports/AASLD_2007/Abstracts/Tuesday%20posters.htm

relapsers who are retreating might also want to look at abstract 1310. "Retreatment of HCV Genotype 1 Relapse Patients to Peginterferon/Ribavirin Therapy with an extended Treatment Regimen of 72 weeks with Consensus Interferon/Ribavirin versus Peginterferon alpha/Ribavirin" by  Kaiser et. al  There does seem to be some argument for going with CIFN, though they don't give the N of patients involved.

Also regarding that Pearlman'07 study above, it's worth noting that those 38% and 18% SVR rates reflect patient selection. As noted in the study and in the commentary letter by Hoefs and Morgan published in the same issue of Hepatology, 48% of patients were African-American, a factor associated with unfavorable SVR outlook.  

The important point, IMHO is that 72 weeks cut the relapse rate in half - thus regardless of where  age/race/sex/fibrosis etc. put your SVR odds, if you're a slow responder who stayed UND-to 48,  it looks like (a) you're facing much worse than average relapse risk and (b) you can make a big dent in that risk by continuing to 72.

jim : I've never had any issue with the futuristic, tentative, forward-looking aspects of frequent/sensitive VL testing. My objection is simply that given the data currently available for interpreting test results,  drs are not guilty of practicing inferior care by not ordering more tests than those set out in that JAMA review (baseline, 4, 12,24). With all  due respect for the eminent Dr. Shiffmann, given what's available today, I don't believe he has anymore of a clue than anyone else as to how interpret a result  like  that of MO's 3 week test.

Of course all of this is evolving. However, I wouldn't be at all surprised if part of that evolution were not only a move towards better characterization of the VL-curve-to-SVR correlation but  also towards tests, like hcv-specific CD8+ T cell response, that more directly measure what's actually going on in the trenches. For example, no amount of  VL tests would have helped skipinca understand why his rvr fell apart.

[Proactive]

To: updated
Updated list of Extenders:Tx completion date: results
(please copy and repaste-add/update any added info on the list)

DoubleDose - 10/04/03----cleared--svr
layla - 7/14/04
mikesimon - 15/06/04 ---cleared---svr
Cuteus - 11/15/04
Jaroman  - 10/06/06
NYgirl - 2/08/07 --cleared--svr
Randalee - 3/01/07
Sincebirth - 6/09/07 --Relasped
Can-do-man - 07/20/07
Bill1028 - 7/07/07 - Relapsed - did 72 weeks + 4 week dose reduction
MustangShelly - 08/01/07 ---cleared -svr
Kalio1 - 08/24/07----cleared---svr
Valtod - 8/27/07
St. George - 9/07/07
bobk                --------------relapsed
revenire            -------------relapsed
BThompson4---------relapsed
sldb (98 weeks) ----cleared svr

Still treating..........update when completed please
NYCMark - 66 of 72  
Bill1954 - 51 of 72
Proactive - 45 of 72
zazza - 43 of 72
Wyntre9  - 37 of 72
cruelworld - 37 of 72
FloridaMouse - 6 of 72

[jmjm530]

Thanks for the study. Yes, I do think out 72-week rates are higher than the 38% stated, and that could be accounted for by a number of reasons.

But assuming even 50-50, I do think that it's an important *decision* at the 12 week mark, for the slow or partial responder and not a far gone conclusion to just chug away. In my mind, certainly liver histology would play a big part in the decison to treat another 60 weeks (after investing 12). The alternative would be to cut losses, gather the troops, and fight another day with hopefully a better drug regimen and a shorter duration -- in the case of Telaprevir that would potentially be 24 weeks against the 60. In other words, I see the 12-week point (with partial responders) as a decision point -- not as a stop or go point.

The other important stat in this study and others, is that extension appears only recommended if a two-log or greater drop by week 12 and I believe that is all this particular study dealt with. If the patient does not have a two-log drop by week 12, then the SVR numbers should be significantly lower and in most cases would suggest stopping treatment.

Willing, don't know if you caught this thread here: http://www.medhelp.org/posts/show/407302

In it, you might find some additional reasons for ordering frequent viral load tests, esp in the early stages. Besides other utilities as already discussed,at least according to one well-known clinician, the data could be very useful in a re-treatment scenario to help predict applicability.

-- Jim

[nygirl7]

St. George unfortunately relapsed.
You didn't note down that Cuteus is SVR but she definitely is!

I personally think the newer bunch will have much higher rates of SVR.  With the new group - we now have the Berg and Sanchez Tapias studies. Med reductions have been almost done away with because the docs now know better. People are treating harder and sticking to the plan in a major way.

Prior to these two studies it was pretty much just a desperation move that these guys were smart enough to pick up on without any data.  Now, it's a real medical viable course of treatment.

You know..it's not going to be so hit and miss because it's a completely different course of therapy than guesswork.

Thanks for the list - clear and going strong month 11 1/2

[BThompson4]

Sincebirth and bthompson4 relapsed.  NYCmark recently did or will soon do three month pcr.  Revenire did 53 of full peg and riba and then 1/2 peg for thirty weeks with no riba, so he did not do the 72 week regimen.

[Proactive]

Updated list of Extenders:Tx completion date: results
(please copy and repaste-add/update etc.)

DoubleDose - 10/04/03----cleared--svr
layla - 7/14/04
mikesimon - 15/06/04 ---cleared---svr
Cuteus - 11/15/04
Jaroman  - 10/06/06
NYgirl - 2/08/07 --cleared--svr
Randalee - 3/01/07
Sincebirth - 6/09/07
Can-do-man - 07/20/07
Bill1028 - 7/07/07 - Relapsed - did 72 weeks + 4 week dose reduction
MustangShelly - 08/01/07 ---cleared -svr
Kalio1 - 08/24/07----cleared---svr
Valtod - 8/27/07
St. George - 9/07/07
bobk                --------------relapsed
revenire            -------------relapsed
sldb (98 weeks) ----cleared svr

Still treating..........update when completed please
NYCMark - 66 of 72
BThompson4 - 63 of 72
Bill1954 - 51 of 72
Proactive - 45 of 72
zazza - 43 of 72
Wyntre9  - 37 of 72
cruelworld - 37 of 72
FloridaMouse - 6 of 72

[willing]

two other old-timer names are bobk and revenire both of whom extended and relapsed. Bobk did abot two years, rev I can't recall but perhaps someone else will.

Anyone interested in 72 might want to take a look at a recent study in hepatology:

http://www.ncbi.nlm.nih.gov/pubmed/18046717

which tracked 112 slow responders at full-dose rbv, unlike the earlier studies.

Also it's worth digging through the abstracts of aasld'07 for a japanese study that reported positive results with 72 weeks.

Overall, the success rate for 72 on this board does seem much higher than observed elsewhere!

[DoubleDose]

You can add after my nickname:  DoubleDose  10/04/03  cleared  - SVR, along with the other extender SVR's.  I am a big believer in extending tx, if the profile of the treating individual fits the appropriate pattern.  I think the extension usually works for slow responders, especially if dosing is kept at maximum levels throughout tx.  Best wishes to all of you who posted on this subject.  I like to see the above sort of public record-keeping, and follow up.  It helps everyone out there see real living examples of tx strategies that have worked, for real people, not just statistics in studies.  Our forum can serve as a great sounding board for those new to HCV treatment and treatment problems/ challenges.  Hats off to all of you for the ongoing involvement and input.  The information disseminated is invaluable, and the discussions are always stimulating.  Lots of bright and concerned people to be found here.  

DoubleDose

[FloridaMouse]

DoubleDose - 10/04/03
layla - 7/14/04
mikesimon - 15/06/04 ---cleared---svr
Cuteus - 11/15/04
Jaroman  - 10/06/06
NYgirl - 2/08/07 --cleared--svr
Randalee - 3/01/07
Sincebirth - 6/09/07
Can-do-man - 07/20/07
Bill1028 - 7/07/07 - Relapsed - did 72 weeks + 4 week dose reduction
MustangShelly - 08/01/07 ---cleared -svr
Kalio1 - 08/24/07----cleared---svr
Valtod - 8/27/07
St. George - 9/07/07

Still treating..........update when completed please
NYCMark - 66 of 72
BThompson4 - 63 of 72
Bill1954 - 51 of 72
Proactive - 45 of 72
zazza - 43 of 72
Wyntre9  - 37 of 72
cruelworld - 37 of 72
FloridaMouse - 6 of 72

Relapsed, VL 260,000, ASTAbdominal wall surgery
Abdominoplasty - series
Adjustable gastric banding
Allergy testing
Angioplasty
Ast
Asthma
Asthma and allergy - resources
Asthmatic bronchiole and normal bronchiole
Astigmatism
Bacterial gastroenteritis 70's, bloodAmylase - blood
Bleeding
Blood cells
Blood clot formation
Blood clots
Blood culture
Blood differential
Blood gases
Blood gases test
Blood glucose monitoring
Blood in semen work is normal except for elevated ASTAbdominal wall surgery
Abdominoplasty - series
Adjustable gastric banding
Allergy testing
Angioplasty
Ast
Asthma
Asthma and allergy - resources
Asthmatic bronchiole and normal bronchiole
Astigmatism
Bacterial gastroenteritis and ALTAcupuncture and pain
Alt
Consumer rights and responsibilities
Day care health risks
Diet and good health
Galactose-1-phosphate uridyltransferase
Healthy diet
Obesity and health
Pharmacy alternatives
Physical exam frequency
Pregnancy - health risks. My plateletsPlatelet associated antibodies
Platelet count are in the low 100's, slightly higher than pretreatment.  I have most of the negative predictors including cirrhosisCirrhosis
Cirrhosis of the liver
Liver cirrhosis, ct scan
Primary biliary cirrhosis.  Minimum sides during treatment and none post.  I feel 100% and hairHair loss
Hair transplant
Male pattern baldness returned as curly, thick, and less grey as pretreatment.  I'll try to get into a trial in the next 6 months or try maintenance since I do respond to interferon, until something better comes along.  They say 3 times the charm!

[Bill1028]

DoubleDose - 10/04/03
layla - 7/14/04
mikesimon - 15/06/04 ---cleared---svr
Cuteus - 11/15/04
Jaroman  - 10/06/06
NYgirl - 2/08/07 --cleared--svr
Randalee - 3/01/07
Sincebirth - 6/09/07
Can-do-man - 07/20/07
Bill1028 - 7/07/07 - Relapsed - did 72 weeks + 4 week dose reduction
MustangShelly - 08/01/07 ---cleared -svr
Kalio1 - 08/24/07----cleared---svr
Valtod - 8/27/07
St. George - 9/07/07

Still treating..........update when completed please
NYCMark - 66 of 72
BThompson4 - 63 of 72
Bill1954 - 51 of 72
Proactive - 45 of 72
zazza - 43 of 72
Wyntre9  - 37 of 72
cruelworld - 37 of 72

Relapsed, VL 260,000, AST 70's, blood work is normal except for elevated AST and ALT. My platelets are in the low 100's, slightly higher than pretreatment.  I have most of the negative predictors including cirrhosis.  Minimum sides during treatment and none post.  I feel 100% and hair returned as curly, thick, and less grey as pretreatment.  I'll try to get into a trial in the next 6 months or try maintenance since I do respond to interferon, until something better comes along.  They say 3 times the charm!

[sldb]

geno 1a und. stage 4.  did 96 wks  und bw wk 12 & 16, i did this b/c  i did not feel it would be successful txing for 72 wks. due to my staging and geno type. SVR17mths now. I tolerated the medication pretty well so it wasnt a hard decision.

[BJ1fish]

I did 72 weeks of infergen and riba finished I think March 06. Relasped. Have been on mono treatment 1st 6 months infergen  and  then the last year peg intron. (Maitenance) I have been und and will soon come off of the peg. If I relaspe again they have study for me to get into.

[Proactive]

DoubleDose - 10/04/03
layla - 7/14/04
mikesimon - 15/06/04 ---cleared---svr
Cuteus - 11/15/04
Jaroman  - 10/06/06
NYgirl - 2/08/07 --cleared--svr
Randalee - 3/01/07
Sincebirth - 6/09/07
Can-do-man - 07/20/07
Bill1028 - 7/07/07
MustangShelly - 08/01/07 ---cleared -svr
Kalio1 - 08/24/07----cleared---svr
Valtod - 8/27/07
St. George - 9/07/07

Still treating..........update when completed please
NYCMark - 66 of 72
BThompson4 - 63 of 72
Bill1954 - 51 of 72
Proactive - 45 of 72
zazza - 43 of 72
Wyntre9  - 37 of 72
cruelworld - 37 of 72

[Proactive]

Congrats and thanks for the update Shelly...I have updated this simple list with you info (best to keep it simple)..Any other updates, please copy and repaste this simple format..thanks Pro
Updated list of Extenders:

DoubleDose - 10/04/03
layla - 7/14/04
mikesimon - 15/06/04
Cuteus - 11/15/04
Jaroman  - 10/06/06
NYgirl - 2/08/07
Randalee - 3/01/07
Sincebirth - 6/09/07
Can-do-man - 07/20/07
Bill1028 - 7/07/07
MustangShelly - 08/01/07 ---cleared -svr
Kalio1 - 08/24/07
Valtod - 8/27/07
St. George - 9/07/07

NYCMark - 66 of 72
BThompson4 - 63 of 72
Bill1954 - 51 of 72
Proactive - 45 of 72
zazza - 43 of 72
Wyntre9  - 37 of 72
cruelworld - 37 of 72

[ponyshel]

I had to change my screenname as to a move. stangshelly i.e ponyshel is now 6+ months post tx of the 72 weeks and I am happy to report cleared the 6 month mile marker still undetected ! I also am a first time txer geno 1a 2/2 and doing well . I did manage to damage my thyroid but there is still hope. I do notice a big difference in being clear. I wish you the best of the best results! Hugs :) shelly

[Proactive]

Is this your final week coming up Bill, or do you have one to go after that?
Hope all is well...Weren't you going to consult your doc and discuss the possibility of extending past 72, or was I just dreaming?
pro

[Tallahassee]

Sign me in...
98+ weeks of daily high dose Infergen (~18 mcg) + riba (~24-28 mg/ kg) + Neupogen (300 mg 2-3 times per week).

Non-responder (zero!) to 48 weeks of regular Interferon + riba 1000 mg (clinical trial of 1995-1996).  Failer other X (?) number of treatments with Infergen + Interferon combinations.

12 weeks post treatment still was UND ...fingers crossed.

All the best!

[antman]

hey guys- i saw my name come up concerning going 72 weeks. good memory zazza! i'm @ week 33 now and have been UND since between week 12 and 15. when i asked my Dr. about the studies showing 72 weeks increased SVR he said he would look into it but didn't think it would be neccessary. i have mixed feelings. i still have plenty of time to decide and would need his & the insurance co. blessing anyway. hope everyone is doing well. my sides have been almost non-exisant lately. just itchy sking and lehargy. i,m working full time, no problem and feel weel mentally. take care!

[Valtod]

see http://www.medhelp.org/posts/show/299660

[wyntre9]

Thanks drofi,

I guess I've got the stats all wrong (as usual).

After reading the Berg report and portions of the Drusano and Tapias-Sanchez  I thought SVR rates for extenders increased from less than 50% to around 70%.  (can't find the studies to quote exactly).

And I also thought the odds of genotype 1A folk were about 50% for achieving SVR with 48 week SOC.

But maybe that last stat was for response rates in people who reach UND by week 12.

I dunno.

i'm a little confused (understatement) now about just what the benefits ARE of extending to 72 weeks for slow responders.

Anyone who can help me understand, pleeeeze chime in!

Wyntre

[frijole]

I'm a 72 week club wannabe

I didn't keep records on who was doing 72 but I can add a couple

Lvdbygod
Eisbein

Both did 80 plus and finished sometime in 06.

You are a tough bunch, you 72'ers!

frijole