You ended tx 6 months ago and don't know your viral load results?
I call that 'cruel and unusual' treatment.
no...it didn't work like that...they gave me VL results after the first 24 weeks. I ended treatment a year and a half ago.
What I would like to see is my VL results for the first 4 weeks. They did blood work every week for the first 4 weeks, I started with a high VL and I'm assuming that I got the magic bullet since I ended tx after 24 weeks...so I'm really curious to see what week I went UND.
I did achieve SVR and I'm very thankful for that...I'm very interested in how fast the stuff worked on me. I was wondering if there were any members here who have been given their info.
Too bad it's a holiday Monday. I can't wait to call my center Tuesday.
I emailed SN...she replied that she hasn't received info yet and sounded like she thought I wouldn't get the info I was looking for...
I was in the '08 boceprevir trial and in their informed consent, the only information revealed in the unblinding was which arm you were in (placebo, bocep 24 wks or bocep 48 weeks). Schering provided the VL info all along. Perhaps now that the tele trial is unblinded, you could talk your study team into giving you the VL information. I know what you mean about the desire to just know the information. Would have made me crazy not to know and can't imagine how you stood it.
....I found this link and sent a message to Vertex requesting my info...
I just contacted my center and I still know......Nothing!! (other than the fact that I'm SVR and it was free)
Sure will be nice to get some info. Although I am betting that all they will tell me is that I was in the control arm.
Thank goodness for private PCRs.
I was a detailed reports very 2 weeks for the first few months and all tru the bocep trial,nothing was hidden from me,all my blood results and VL tests,Idont understand why you didnt get all the results with the bocep trial
So much for my prediction. I just found out that I was received 12 weeks of Telaprevir.
I was initially convinced I was getting the real drug, so when at week 24 they told me I was going to treat for the entire 48 weeks, I was shocked (to say the least). I then assumed I had been in the placebo arm the entire time.
When I got the call today that I had gotten the tela for 12 weeks...I was like "what?????". Apparently I didn't respond as quickly as they would have liked, so they kept me going. Scary thought. It makes me realize now that without the tela, I may not have responded to SOC alone. It also made me realize that I'm very fortunate to not have developed any mutations. Seriously feeling like I dodged all kinda bullets with this news.
I'm so thankful to Vertex and Telaprevir. And especially to all here that helped get me to this point. Shout out to all my study buddies-------Yay!!!!!!!!!!!!!
I'm looking forward to seeing what everyone else finds out. Thanks, Gator for starting this thread.
Good luck to all,
Just 3 months with Telap? and 3 months od SOC...amazing...i guess ya could say you have a 3 month lead in with the telap in a sense,either way,you win the SVR prize
Yeah....except that I went for the full 48 weeks. And yes, bottom line is SVR!!!
I have never posted a thing but have watched for over 2 years and followed with interest the vertex trial. A little background. I am 61 with beginning cirr and had a transfusion at 1 month old. In 1970 at a birth control center in Hawaii, I found out I had elevated liver enzymes. I had my first biopsy done and was told I had non A non B hep. I was leaving for graduate school and going to Europe to study. I was told, just don't do a lot of drinking! ha! I am not a big drinker, but college,traveling,.......Later on, I had the test for hep C. No symptoms at all. And yes,positive. I heard about treatment but it was only interferon and the success rate wasn't so good, so I declined. I had my third biopsy,(had another one in there and my liver was fine). This time, things were beginning to change so I researched clincal trials.
I was in the one that Isabella and some others here are on. I began in July (yikes almost 2 years ago). I just retired from teaching but during treatment, I taught full time . I taught Special Ed in an urban high school. I had pretty minor symptoms except for one biggie. I became quite anemic very early and continued being anemic throughout . I had probably 12-14 transfusions.My rbc went to 6 and I was hospitalized. Iwas teaching school that day and drove myself to emergency. stupid. My down point during treatment came when I was told I had to do 48 weeks. Everyone I talked to kind of thought I had the real stuff. I became undetected when we all found out-was that at about 24 weeks? I cannot remember. I continued being undetected and still was after the 6 months after treatment. Now for the surprise......I just found out today I was in the control group! I am not dissapointed as it worked and I got excellant treatment. Yes, the meds were free, but at the time I had the cadillac of health benefits, so that wouldn't have been an issue. I had decided as soon as I found out I would post. I cannot thank all of you so much for your posts. You didn't know it, but you were my lifeline going through this. I now feel set free :)
SVR is wonderful. Have always been high energy even with hep c. Now I am back to my crazy active self. I told a few good friends who rooted for me the whole way. They even had a cake with a dragon on it when I finished treatment. Life is good
Thanks for sharing, jacksb.
SVR is ours, no matter how we got there. Thanks Vertex.
Life IS good!!
Life is better than good izzy its a wonderful life my dear,i actually love all you gals and guys from the bottom of my beating heart and soul,i mean that too,if yu ever mmey=t me in real life you would see i have great personality to boot
WHO LOVES ya?
i meant too say
"if you ever met met me in real life"..in above statement
I am curious, Izzy
My trial nurse only received information regarding the arm I was in-still do not know at what week I became undetected. I am curious as I did not get a private PCR. I wish I had now, but it's done! Did you find out that information? I thought I was told I would receive all that and maybe I still will.
I also have to tell you all that my husband was wonderful during my treatment . He patiently listened to me b.....ch and kept cheering for me.
I'll be darned. Finding out you had the drug after thinking you were on placebo is incredible. Let us know when the twilight zone feeling fades away (ooo-weee-ooooo). As long as you ended up at the right point.
My nurse only had the info on which arm I was in, but said she will request more comprehensive data. That will probably take a while, but I still want it.
I did get private PCRs. I started with a VL of 919,000 and at day 6 it was 616. I did another one at the 21 day mark (yeah, I'm a little impatient) and was surprised to see that is was 8. I was a bit worried at the time that it wasn't UND to <5, but figured that by trial standards it was because they only test to <10. That's what made me think I was on the placebo....now I see that my virus was just being stubborn. I thank God I did get the Telaprevir, otherwise I may not have cleared at all.
Oh, yeah....my husband put up with alot during tx. I'm pleasantly surprised we survived that 48 weeks. Celebrating 25 years together next weekend,despite tx, lol!!
Ask your nurse to request the additional data. It'll be worth the wait.
All the best,
I agree . We will be married 38 years! Yikes...He was a real trooper through out this. I too am totally impatient and should have gone and had a PCR early. My anemia tanked at about week 3-4 and another month later, I was having transfusions..W/out them, I would have not been able to complete the trial. I also lost around 18 lbs. My nurse said had I lost it in the beginning, they might have taken me off the trial....I have gained some back which I wanted to do, as I looked quite gaunt with skinny face, and hair that was becoming quite thin. I remember you saying you still colored your hair and I laughed. I never missed my color or hair apt. Did it every month. Hey, at least I wanted to have something I wasn't upset about. My hairdresser did get me a gigantic bottle of Nexi??? and my hair is fuller and in wonderful shape now. It did get depressing looking at my computer at times and seeing hair all over it. I was never bald, just thinning out. I cut it very short and that was that. At one point one my para pros ( a dumb one at that), said in front of the entire class" Are you losing weight- and what is going on with your hair?" My main alibi was that I was anemic and that was what I told everyone. No-one blinked an eye. I probably told about 8 friends and my family. I felt it was no-one's business . I didn't want the studen'ts or their parents to know as some of the parent's were not much brighter than the special need students that I taught. I did love the kids, but after 38 years of teaching special ed, I decided it was time to enjoy what other things life has to offer!
I will tell you something funny-guess I am telling the world, but who cares. I had a pap test during treatment. I was so incredibly dry, my gynecologist could barely examine me. I told her to look carefully-she might find some cactus growing! Have a good weekend.
Thanks for starting this thread! I called my study site this week. My trial coord called back at a time when I couldn't answer the phone! She said she'd be out on Monday, so I guess I have to wait till Tuesday to find out something.
I will be shocked (almost as much as you, Izzy!) if I wasn't in the group that got Telaprevir for 8 weeks. I started tx Oct 2008 and finished April 2009. Starting VL of 3.6 million. UND in all follow-up tests, the last one March 2010.
Wah hoo! Thank you Vertex! And thanks to all of you here who helped me make it through tx.
I'll post when I find out something. I think I'll also do the email thing from the link you posted, Gator.
OMG I got a star! This is the first post I've made since the star thing. I thought I wouldn't have any stars. How does this work?
Just got the call from trial coordinator. As I thought, I was in the 8-week Telaprevir group.
Soon I will receive a letter from the trial center, detailing my tx (SOC + Telaprevir for 8 wks, then SOC for 16 wks). I asked about VL results, when did I clear? She said she hasn't gotten that information yet, but will receive it soon. They aren't allowed to copy the data sheet from VTX, but she said they may put the info on a flow sheet and include it with my letter.
That's it for now. Confirmation is good : )
Yay!!!! Confirmation is good =). Congrats on getting the info and the drug!!