mary55 Prove 3 results

Sorry but I have been under the radar for the past few months.I have wanted to post but didn't want to jepordize myself. But now that I am done I will share. I was in the "C" arm but was taken off at week 12 due to the rash.My viral load was 9 million and it dropped to 70 the 1st week. I was undetectable until 4 weeks post. I just got my results from my 3 month post and I am detected. Dam I was bummed but not all is lost because I know these drugs worked. If I could have had the Ribaviron and no rash I could be SRV. Now I know that there is hope. I'm ready for the next trial!

Mary

[dmhrdh]

I'm so sorry to hear this.
Sounds like you have a great attitude.  Hang in there!!

[mremeet]

Sorry to hear it mary, sounds like you put up a good fight though. I don't recall if "C" had riba or not, did you get the riba? Anyway, hang in there, sooner or later you can put the virus down for good - maybe even with the help of boceprevir.

[FloridaMouse]

So sorry 'bout your relapse.  It stings, I know that feeling all to well.  Here's hoping more and better treatment for you in the future with SVR.

Mouse
Genotype 1a, Stage 3, Grade 3
finished tx 4/2007
relapsed 9/2007

[viaduk]

Sorry about your relapse.  Unfortunately, I also know that feeling.  Hang in there; we will beat this disease!

[zazza]

Seems like you did amazingly well to have been in the C arm. Too bad it didn't last, but it does look good as a future prognosis - with ribavirin this time. It is too bad that all you guys had to prove that ribavirin is necessary. I wish you the best and SVR in the future!

[glucklich]

Sorry for your news. Stay positive! Best to you.

[miked]

Mary, just yesterday I learned I was in Arm D.

Unfortunately Ribavirin is still a requirement, even with all it's nasty sides.

Someone posted recently that Vertex is considering "rolling over" Arm C people.  Is that true?

Take a break if not.

Mike

[dointime]

Hi Mary

I've been looking out for you ever since you crashed out of the trial with that awful rash.  I am so sorry to hear you relapsed.  

You are right on about the no-rash part.  I'm not stepping up to the plate for another rash like that any time soon.

dointime.  

[FullOfHope77]

Sorry to hear that you had a relapse and experience as well. I too have a rash that seems like it's all over my body as I certainly itch all over too. I have just tried to tough it out as I'm at week 20 now and want to stay on course with tx. I think I'm in Arm B and will report the itching next week when I have appt. but plan to continue on the same level unless I just can't handle it. I don't know if I will ever get the opp again and I'm stage 4 and need badly to SVR this go. I hope that there is something for the Arm C folks as they endured a lot for everyone too but seem to get the breakthrough and only needed the riba to knock it completely. Good luck and will be watching to see how it goes.

[susan400]

Mary,

Have you been reading about the Schering Protease Inhibitors that are in clinical trials right now?  That may be a hope for us down the road.  Supposedly, the Schering one doesn't produce the rash like the VX, but has comparible results and also, supposedly they allow rescue drugs-which is another plus.  I think, if I'm not mistaken, they may also use SOC in all the arms-so there would be no (non-Riba) arm???  Does anybody know about this???  Chime in, I may be mistaken on the last statement, so correct me if I'm wrong on that.    Susan

[mary55]

Thank you all for your support. Susan I am ahead of you! I spoke to my nurse about the Schering trial and I was told that they are doing them but I do not qualify because they are only taking treatment naive patients. I got the impression that this was a Phase 3 trial. Should be on the market within 2-3 years. Until then there is nothing they can do for me. Being a stage 4 makes the situation very difficult. This does not make sense to me....you would think that if they would be doing a Phase 3 that they it would be including all patients.
Mary

[susan400]

I believe, if I'm not mistaken, that there's something called 'compassionate use', or something similar to that.  Your Dr. could contact the drug company "Schering" and I'm about 99.9% that he's at some point or another spoken with a Schering rep to where he'd have their number....  and can get you the study drug-through compassionate use-outside of the study.  Schering has 'committment to care' programs with their regular drugs-where you could get the SOC drugs at a reduced or free cost+the study drug through compassionate use.   This is what I've heard--for people who have a serious illness-that they can bypass the normal 'criteria' requirements.....   I would inquire from your doctor about this, if you are really wanting to move forward instead of having to wait.   I'm not in a late enough stage to be able to go that route, my being a stage 2 grade 3, but with you being a stage 4, you may be able to.   Susan