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

[CockSparrow]

Thanks for the link and flash back in time. Interesting thread, hasnt Jim changed.
CS

[Proactive]

Congrats on finishing the marathon!!!. I would also be interested in how many of the 72 weekers were/are treatment naive vs. 2nd/3rd timers etc. Myself, first time treater...
Pro

[Proactive]

I'd also would be interested on 72 weekers med dosages, say based on kg and finishing hgb (was your hgb 14.7 at finish?)
1.57mcg/kg pegintron
21mg/kg riba
(current hgb @ 12)
stats are in my profile
pro

[zazza]

I saw on the UK forum that Sincebirth has relapsed. He was however not UND until week 28. He switched interferons during tx.

Cruelworld is probably doing 72 weeks as well. What week is he on?

I started tx with (baseline weight 67 kg/148 lbs):
1.49mcg/kg pegintron
14.9mg/kg riba

Dosage since week 41 (weight 74kg/163lbs):
1.62mcg/kg pegintron
13.5mg/kg riba

(current hgb 9.5, mostly during tx 10-11, baseline hgb 15.2)

I found this in the archives in a post by friole (05/23/07):
"candoman VL at wk 12 - in the thousands, -- just finished 72 and is on maintenance dose"

Very good idea, Valtod, to keep track of the 72-weekers' results.

[zazza]

You forgot Mikesimon! He did 72 weeks as well and SVR:ed.

[zazza]

Found some more 72-weekers from 2004 in archives. Mikesimon and DoubleDose were around then, maybe they know their results. Seems people were doing 72 weeks already at this time.

layla - did 71 weeks - UND at 3 months post
ral
doll face

[zazza]

On his way:
Bill1954 - 50 of 72 (prior relapser after 56 weeks)

[jmjm530]

Congratulations on finishing up treatment!

The best way to reach these people is to post to them directly using their name in the subject line of your post. A lot of people monitor the discussion group but probably don't read every thread. Using their name in the post title hopefully will flag them down.

-- Jim

[Bill1954]

Zazza- Good detective work finding some of the rest of us!
_______________

Valtod-

My sincere congratulations to you for reaching the finish line. My heart goes out to all that are experiencing such wicked side effects. I’m currently on track for 72 weeks, and am having a comparatively easy go of it so far. Thanks for refreshing my memory of what I could be facing; it makes me grateful that I tolerate treatment as well as I do.

A quick overview of my history and stats for anyone interested:

Dx 11/04 with HCV GT-1
Grade 3, Stage 3/4 per biopsy 1/05
Commence treatment 2/05 with Pegasys/Riba
Slow response at 12-week juncture; did not achieve 2-log drop
Increase riba dosage to 1800 mg/day, and extend Tx to 56 weeks.
Achieve UND (<50 IU/mL) by week 20
Experienced moderate sides with mild depression, severe fatigue, and significant diarrhea.
Relapsed at 30 days post Tx.

Commence re-treatment with PEG-Intron/riba 9/06.
Assigned dosages are as follows:
PEG-Intron 200 µg/week (~2.31µg/kg/week)
2.0 g ribavirin/day (~23.1 mg/kg/day)
Baseline HGB was 17.4; currently at 13.1 (no EPO required)
Duration of treatment extended to 72 weeks based on prior relapse as well as my ability to tolerate treatment.
I achieved UND (<5 IU/mL) approx. week 8
I’m currently in week 51/72. *So far* the sides have been tolerable; I no longer walk or run, and this has effected my blood glucose control somewhat. I’ve experienced some moderate fatigue and occasional nausea to date. I know there’s plenty of time left for that to change ;o), but I’ll take what I can get.

I’m sure I left data out- please feel free to ask additional questions. I hope your VL sticks, and you get to join the truly elite; SVR!

Take good care,

Bill

[cruelworld]

we will all have to write books on how to survive a world war. im only at week
37, so i havent tasted real prolonged torture. i hope it doesnt get much worse.

bill 1954,
i cant believe youre still marching through such heavy overdose land!
you are almost double dosing everything! OMG! i knew it was high but i didnt realize it was that high! if you cant walk (exercise) anymore it must be a lot worse than you let on. you should consider joining the military! they would take you even if you were 100 years old!

good luck all!

[lostpass]

I did 12 months of Rib and Peg  Geno type 1 post treatment 6 months ended on June 19th' 07.  My Dr. says I am cured.  On the 19th of this month I will be 3 months and holding beyond post treatment.  I do have side effects. Muscle aches and pains, fatique and short term memory loss. I have gained weight and need to lose.  Started working out at Curves for women again ... going easy.  I do feel much better, but not back to myself... I am told, it all takes time the Ribaviron attacks the ammune system esp. at your weakest point.  It is hard for me to get up out of a chair.... Once I get moving, it isn't so bad.  I fall asleeep late afternoon, but compared to sleeping most of the day this is a change.  I sleep well at night... no more insomnia.  I am optimistic that as time goes on, I will feel better and better. A member of the 72 Club and wishing the best to all on treatment.

[Bill1954]

Cruel- I’ve missed your sense of humor; I’m glad to see your still lurking out there. I’d send any recruitment officer running right now; my liver, pancreas, and ****** all need an overhaul. I just had to enlarge the font on my ‘puter *again*, trying to avoid reading glasses, and besides; us old hippies hate the war. Come to think of it, I sound like typical officer material, huh? Maybe there’s still a chance…

I suppose I could still run, at least physically. My problem lately has been apathy. I really don’t have bad sides, at least not constantly. Weeks 35 thorough 40 seriously tested my sense of humor, but then things eased up a bit. I still feel a little queasy now and then, but I’m gaining weight and trying not to eat like a horse.

What’s up on your end, bud? I haven’t been participating as much here as I used to, so I don’t keep track of everyone’s progress. I recall you were considering increasing your ribavirin; how is that going? Good to hear from you, and stay in touch. I should be finishing treatment in Feb ’08; late March, I’ll try to post preliminary results.

Take care, and keep us posted when you can—

Bill

[Bill1954]

BTW; ****** rhymes with decker, if you hadn’t guessed…  

[jmjm530]

"Wrecker" ?

[BThompson4]

Sorry to hear about Sincebirth.  I think he had consulted with Dr. Cecil on his old forum about switching interferons.

Saw my new hep doc at post transplant clinic Thursday and he is hinting at extending to 78 weeks, which I am not very excited about after getting a pcr of 43 IU/ml during week 55 (had had 15 or so UNDs prior to that; was UND week 58).  He also wants me to maintenance dose if I relapse.  Hard to decide since I am pretty happy with my biopsy at week 36 of tx which showed fibrosis fell from F2 to between F0 and F1.  That improvement I hope would get me healthy enough to wait for Vertex, which is way preferable to the current SOC.

[Bill1954]

Hehehe, only in my dreams :o). I knew I left one on the table when hit the post button, but I didn't realize it was a good one. I hope your weekend is a good one, old friend--

Bill

[wyntre9]

Good idea, listing extenders on one post.

thanks for that.

wyntre

[Valtod]

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
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

This thread should be considered a follow up on:
"okay I need some stats for all the 72 weekers"
http://www.medhelp.org/posts/show/223991

Proactive, zazza, jmjm530, Bill1954, cruelworld, BThompson4, wyntre9 thanks for the responses.  

Zazza - great data mining :-) I remember frijole was maintaining a spreadsheet of people on Tx. Hopefully, she'll see this thread too and help us with this list.

Bill1954, I agree with Cruel - you're like a real war hero or a Rambo of Hep. Hats off to you!

Jim, thanks for the congrats and the advice, which I'll follow.

BThompson4, I sincerely hope you won't relapse. But even if you do, F0-1 is great news. If one doesn't have autoimmune reactions and severe rashes, no doubt Vertex would be a way preferable to what most of us have to endure on SOC.

Does anyone know more about Randalee? Posted only once to announce end of 72 week Tx:
http://www.medhelp.org/forums/hepatitis/messages/45269.html

[meki]

You can get an overhaul on "THAT"?

Woohoo --- the world is definetely changing! LMAO!

Meki

[zazza]

Wondering about antman, didn't he decide on 72 as well? He was UND at week 15, had a viral load of 55 at week 12.

[drofi]

Drofi, Geno 1b, Stage 3/3 of four.
Startet with 180 ug Pegasys + 1200 mg Riba. Inreased Ribavririn after 3 weeks and after all the weeks have an average of 17.8 mg /kg in week 34 today.

Respose was slow: Got a 2log drop in week 12, but still 830 IU/ml, week 16 still 70 IU, <10 in week 20 and 24, UND in week 28.

Do you think it makes sense to continue? I would appreciate your opinion very much. I am in week 34 now, tolerate it quite well, and my strategy is to go for 72 weeks and add a low-dose reduction period of 8 weeks or more before I quit completely. A low-dose reduction period (half dose) should offer the body the chance to adapt.

[Lonestar823]

LoneStar 73 weeks 8/8/06 - undetected five months post - no 1 year.  was told infergen was my last option for the time being.    When the new meds get closer I'll recheck.  1A  grade 1-2 stage 2.

[glucklich]

Curius as the the indications that 72 weeks would be a good treatment. can someone tell me more about it.
I did 1200 rib in round 1 and what a difference in round 2 with only 1200. Anyone with more riba has all my sympathy.

[NYCMark]

This is my 4th cycle of treatments. First was years ago with plain Interferon. Second was  interferon and ribavirin. (These two treatments had insufficient response.) The third was in a study with Dr. D. using Pegasys and Ribavirin for 48 weeks. I relapsed.

Liver bipsy before this current round: 2/2. I started this round of treatment in June 06 using 360 ug of Pegasys weekly plus 1200 mg ribavirin daily for 12 weeks. I was undetectable somewhere between weeks 2 and 6 (we failed to get a week 4). After 12 weeks, we cut the Peg back to the normal 180 ug weekly, and reduced the riba to my weight-based dose of 1000 daily (I was suffering from terrible riba rashes). I have been undetectable since (except for a "blip" one month of 62 iu.)  I've usded Procrit now and then, and even Neupogen on occasion when my ANC went to 300 (although it was more at my urging than Dr. D's suggestion).

Hope this recap helps.

Mark