Becky: Thanks for the sweet note. I think you are correct; Telepravir is nasty on its own.
Electra: Good luck to you as well. are you having major sx or are you OK?
Thanks Cheese.
Hang on Andiamo.
Best wishes.
Hope it works for you.
Cheese
I am just a week behind you and have been counting the days to week 24! Good luck to you!!Looking forward to hearing your news.
Treated seven times? Amazing strength and determination.
So sorry to hear the treatment is getting to you. You always sould like such an upbeat person that when you complain , even a little, I know it must be rough. I know you said you're done with sailing for the count, but I just wanted to remind you to cover up when you're in the sun. You don't want the dreaded rash popping up on top of everything else!
Also, I suspect it's not just your age that is making this treatment so miserable, but the telepravir.
Hang in there. We're all pulling for you!
Thank you for the support. I love your suggestion about sailing, but I am down for the count and can no longer sail until this treatment is over.
They have changed the procedure for this trial and we are getting all the test results at week 26, so I have been told. As far as duration of treatment is concerned, it will be for as long as I can tolerate it. This is by far the most difficult treatment I have ever gone through - probably due to age. I will do my best - that is all I can do.
My doctor thinks that all the existing data may not apply to Telepravir as far as duration is concerned. Unfortunately for me, there is not enough data to make an informed decision, since I am in a high risk group.
Its truly easy to drive yourself to distraction by juggling the web of what ifs. In a blinded trial, most of us are drawn into that mental vortex, but there is nothing to be found there but frustration.
When week 26 finally comes around, several things will happen. Firstly, you will probably be scheduled for a clinic visit and blood draw the following week, week 27. Secondly, when the PCR results from that draw are completed, Covance will produce a summary report of ALL your PCRs since your first screening visit. You should get that by sometime in week 28, unless they have dramatically improved the cycle time for these results.
Then, at last, you will have some facts on which to base your decisions going forward:
- You will know precisely when you first achieved UND status
- If this turns out to be early, say within less than 30 days of initial dosing, then maybe the 12 +12 protocol might work for you.
- If it turns out to be significantly later, then some longer period of SOC may be a good idea.
While the naive subject picture is becoming clearer as more Prove 1 and Prove 2 data is published, the Prove 3 data for non-responders may be materially different. Its just impossible to speculate, but at least you will know what happened in the first 26 weeks of treatment. My very best wishes go out to you and your fellow Prove 3 lab rats. Of all the Prove groups, you are the people that deserve the SVR you've fought so hard to achieve. Until you have that data, spend as much time as you can passage making in those perfect Carib seas. There is no better treatment for the psyche!
You are right. I am either in group A, B or D.
Yes, we are supposed to meet tonight at a restaurant in Stamford.
I'm sorry, I also meant to say, I wish you the best as far as your results, go. I know that you are tired of the treating...
Susan
Andiamo1,
You would have known already if your were in Group C, by the fact that you would not have been receiving the Ribavirin. I will have a blood draw again (I think), when I go to my Oct. 1st appt. I think that this might be the last one that I have post treatment (I'd have to look at the Protocol sheet again and I'm feeling lazy and don't want to dig it up). I will find out, too, at the end of Nov. (week 26) what exactly happened in my short course of treatment. I will at the very least, find out if I ever even cleared before the 'rebound'. Not that it matters to me. I don't have any desire anymore to retreat with the VX. I am just curious if I even cleared for a couple of days? It will be interesting at least, to see what my viral load did. The only thing that I'm even interested in trying at this point is either a different form of interferon (like Albumin), but w/the Riba in the mix, or going on maintenance and staying there. No more VX for me. I just can't deal with the rash thing.
BTW, I hear that you're meeting w/NYG tonight?
Susan
I will keep you in my thoughts as time nears. Best of Luck to you. Glad to hear you were out on the water again. You and your friend didn't happen to find any panties hanging around did you. LOL!!
Loads of prayers and support for you. Keep us updated.
Cajun
I will probably not extend if I am in the 24 week arm. I might cut it short if I am in the 48 week arm. I will see how I feel after I am off the Vertex drug. I will only cut it short if I can't take it.
How will you extend if you choose to? Your own doctor?
When it comes to treatment length, we can only deal in probabilities and there is not enough data for people in our category, so I agree with what you said. My decision will be made on quality of life and data on existing studies on longer treatment with SOC. After all, at least 50% of the time, we are on SOC.
I find treatment at 67 much more difficult than it was in my late 50s. I am not sure how much longer I can take it and what the long term effects will be. There is not much data on age related SXs.
Andiamo. I am pulling for you. I am several weeks behind you and, well, we all know how it is. I hope for joyous results.
I don't know how anyone can think they have a handle on how long tx should be. Lest we forget, we were not poster kids for the SOC. In my mind we have no clue as to the right length of time for those known to be non responders. That is sort of what the trial is about.
I was told that if we are in group C we will be told to stop the treatment. If we are in A or B we will be told to continue and nothing else.
I agree that 48 weeks seems like overkill and I don't know what I will do yet. I also am tired of being sick and I am not working, but I have been here before while I was working and it is definitely worse!
I'm two weeks behind you and having been watching for your results.
How does this work....they don't let us know our PCR until Week 26. But at week 24 do they tell us if we are in Group A,B, C or D?
I know I'm in Group B or D because of the Ribavirin. I strongly suspect that I'm in Group D because the VX950 pillstasted nice and sweet versus chaulky and bitter (although WCmissy said hers was sweet and she's still in). Also the VX rash from hell has really minimalized.
What to do though in we are in Group B which is 48 weeks of VX-950 + INF + RBV? I really feel that 48 weeks is overkill and I' getting sick and tired of being sick and tired. Don't know how I'll process the information until I received it.
Good luck!
Yes - the tension is really building and I am very nervous.
I feel the same after week 12 (awful), so I am probably in he 48 week arm. So far, my Riba has not been lowered; my Hgb has been 10.3 at every blood test. I should add that when I stopped taking effexor, my nausea subsided.
Best of luck to you as well.
The excitement is building as we get closer to that 26 week mark, isn't it?!?!?
The first time I treated my starting VL was 1,230,000. This time it was 12, 500,000!! So, since I am under the old criteria there is a possibility that at 12 weeks my VL could still have been higher than it was the first time I started treatment. For 6 weeks of this treatment my Riba has either been lowered or discontinued so I'm especially nervous.
How have you been feeling since week 12?
Best of luck to you as we reach this important milestone in our treatment!
I have my fingers, toes and eyes crossed for good news on you.
Meki
I was a slow responder, but became und at 24 weeks and I relapsed after 48 weeks. I relapsed within a week of stopping. This was the last time I treated. Before that, I never responded; this was before PCR tests were available.
I am very interested in your results too. Prove3 are the first people to let us know how much hope there is for nonresponders and relapsers from the triple therapy.
By the way, I am sure you said previously but I forgot, how did you fail your last tx's? Was it relapse each time?
Keeping my fingers crossed for you (and all of us failed tx'ers)
dointime.
I am genotype 1A. I am uncertain about what to do as far as 48 weeks. I am hoping the test results will produce something definitive. the final decision will depend on how sane I am at the time - LOL. The tx is certainly making me crazy!
Allright! I also find out if I continue in the program for my 12 week that I went to last week. I sure hope so but it is really getting excited for you now that you're on the doorway of potentially finishing and getting SVR! I am optimistic for you as well as I believe that you will respond well to the Telaprevir. Are you inclined to continue to 48 to ensure SVR or satisfied the VX will be 'good enough' at 24? I feel that whatever happens to you will likely happen to me but I haven't even gotten through the 12 week gate officially yet... anyway, I am believing that you will be successful and you will finally be rid of this thing. What is your Genotype? I'm thinking 1B but can't remember as I write...
Take care!
How are you feeling after the long weekend?
I had a relaxing time on a friends boat that has electric winches, so no hard work! It was nice to be back on the water again even if not on my own boat.