It's Official

They're taking me off treatment at week 35ish.  I was hospitalized for interferon related pancreatitis 3-weeks ago and my pancreatic blood levels have remained high so they didn't give me a green light to start back on treatment.  Since it's been 2 1/2 to 3-weeks since my last dose they are taking me off with the understanding that the virus will likely come back.  At least I lasted for 35-weeks this time.  The first time I lasted only 24-weeks, 6 1/2 years ago.  The good news is that I will be able to return to my sport as soon as I have regained enough strength.  Jumping out of airplanes for fun makes all the monsters go away.  I guess it just scares the bejesus out of them (laughing).  I'm feeling better already!
Joey

[jdwithhcv]

Hi Joey.  Sorry to hear you've been ill.  I hope 35 weeks tx will have been sufficient for you.  Did you ever go UND, and if so, when?

Glad to hear you're feeling better and back skydiving.  I bet it does scare the bejeesus out of your monsters.  I did one jump and it scared it out of me!  I'll stick to scuba diving - less scary but exhilirating and wonderful.  When I'm in the water the world cannot bother me.

jd

[thegypsy9164]

I was on the Telapravir study.  They wouldn't tell me any of my VL results but said at week 24 that if I hadn't been UND by then that the study would have called to take me off.  So, I figure I went UND at some point.

Regarding the skydiving...I have to get my reserve repacked before I can jump again and am able to do that, but this sickness has sapped my wallet and I'm going to have to get back in financial shape before I can really devote the time and energy (when I acquire some again) to it.  Sure are looking forward to jump 600 and something (haven't looked at my logbook lately).
Joey

[Marcia2202]

Sorry to hear about your ordeal. I really hope you beat it with the Tela. Hope you get back to feeling your normal self really fast!

All the best,

Marcia

[newleaf09]

I have heard several stories of people on PI trials (mostly boceprevir stories) who get stopped early due to side effects, like you.  The ones in the stories remained clear.  hope you are one of the lucky ones, too.  Will be looking forward to your future postings on followup results.

[Rockerforlife]

Another one kills the enemy...THIS boceprevir is amazing,when they say its a powerful effect drug,they aint kiddn...i going to buy a 100 lot of stocks

XXXXXXXXXXXXXXX X        CONGRATULATIONS          XXXXXXXXXXXXXXXXXXXX

[Rockerforlife]

Dont forget,,,in my RESPOND 2  TRIAL they chose a  good % of tuff cases ,high loads ,blacks,cirrious,and all non responders with the toughest geno...this is one powerful drug           BOCEPREVIR ROCKS MY WORLD

[Rockerforlife]

Sorry bout that i meant to post the last 2 comments to another thread.,anyway,if you are treating with a PI...your odds are damn good still

[Trish77]

You'll get stories either way, gypsy.  I was taken off at 34 weeks from a polymerase inhibitor trial and went on to SVR.  I was UND at 6 weeks.  There were others taken off my trial at 39 weeks and others who finished completely who relapsed.  I know of one person on here who did regular treatment and it hit her so hard she stopped at 30 days - and went on to SVR.  So....it's possible that you've had enough of the drug to SVR and here's hoping.  The waiting is tough ... but here's hoping.

Trish

[Tippyclubb]

You said the first tx you lasted 24 weeks.  This time you lasted 35 weeks so it's totally different because you treated with Telaprevir.  Success rates are higher when tx with PI's

As you know I am in the same trial as you were, and was randomized into the 24 week group.  I was UND 4 weeks post.  

When is your next PCR?  

[thegypsy9164]

I have to go back in tomorrow (Monday) to formally end things and return my remaining meds.  My next regularly scheduled visit was for 9-28.  The docs said they were going to continue to follow my progress so they may PCR me tomorrow or wait until another visit.  At this point I don't know.
Joey

[thegypsy9164]

I didn't make it in Monday but went in today.  The PA was upbeat and projected a good chance that I will be SVR at 6-months as that is common with telapravir results similar to mine.  I'll just hurry up and wait to see!  

Still having some problems related to the pancreatitis attack but body seems to feel as if it is trying to figure itself out.  Doc said pancreatitis takes a long time for the body to get over and is very dangerous.  They told me to eat low fat foods so I went to the store, came home and ate cheese cake, 3-fudge cicles and 3-ice cream sandwiches (giggling).

Joey

[Tippyclubb]

Your a rebel ! Lol !

Did they do a PCR today?

[thegypsy9164]

They took blood but with the study they don't tell you anything.  They said they would check with Vertex (or whoever) to see if they would reveal anything since I am now officially off the study except for follow up stuff.

[Isobella]

I'm so sorry to hear about the pancreas issues.  But really happy to hear you were in Tippy's trial.  I am betting you get good news with this PCR.  Telaprevir changes the game.

Wishing you the best,

Isobella

[thegypsy9164]

I got a call from the doc yesterday and was told that as of last week I am still undetectable on my VL.  That was very good news.  I'm keeping my fingers crossed.

Joey

[jdwithhcv]

Bravo!  Now let's hope it remains that way.  Keeping my fingers crossed for you.

jd

[Marcia2202]

GREAT!!!! Congratulations. Am praying that the results keep coming in this way!

[annieCinMD]

I'm thinking the teleprevir probably did the job for you. 35 weeks sounds like more than enough to me. I got stopped for 2 weeks due to sides, and agree that the PIs can cause some people to have awful sides. I was one of them. Just barely made it to 28 weeks.

[Willy50]

By my computations it has been about 4 plus weeks since EOT.   And so an UND at this point is a very good sign.

I was going to post to you when you were taken off; it seemed as though you thought it was a done deal about the relapsing.  Then i started to post, then I remembered you were a past TX failure..... then I started wondering myself.  I deleted the post.  I think that many of the past TX failures will succeed but the pattern is that the past relapsers have the best odds, then the slow responders etc.

It appears that even past non-responders can indeed respond, but they will have a lower success rate than other treatment failure groups.

It looks to me as though you have very good chances of attaining an SVR.  There are relatively few people who relapse post TX if they maintain the UND through TX end (although we don't know when you got there).

Thanks for sharing the good news.

best,
Willy

[thegypsy9164]

Thanks Willy

[Willy50]

Thanks for sharing the good news.  People are thrilled to hear how people are doing in these trials.

Here is a nice summary of Prove 3 from EASL 2009; a nice write up with graphs and tables.  This will give you an idea of how treatment failures do as a group while on triple therapy with TVR.

I would like to think that in Phase 3 the trial participants might have done even better,  Vertex thought that they would achieve fewer discontinuations and realize a higher SVR rate.  Some groups may be able to be chuted into shorter or longer TX arms depending upon response rates.

http://www.natap.org/2009/EASL/EASL_20.htm

......anyway; enjoy.

best,
Willy