Aa
Treatment stopped - options?
They have stopped my treatment permanently. I got the call at 4pm yesterday but haven't been able to do much but be a stun bunny since then.
My CD4 counts that monitor my immune system were too low and they lymphocyte counts never recovered enough so everyone on the trial in my position has had their treatment stopped permanently. I found out yesterday around 4pm and I've just been in a bit too much shock and still am. I wasn't expecting this at all.
I just started Week 34 and I went UND at 6 weeks. My VL was 217 at 4 weeks. I've been on 75% of interferon for about most of 10 weeks now since about Week 25. One week of ribavirin reduction at Week 15.
I just started the neupogen last week. I begin to wonder if there would have been a difference if they'd have let me start the neupogen earlier.
I guess the rumours that have been floating around are true and it's not looking good for R1626 going forward. They did have someone die on the trial and someone has fallen quite ill and I guess that's as much risk as this trial incurs now and they've pulled us riskier people off.
I don't know what my options are really. I'm processing and not coming up with much, can't say that I'm really able to think clearly. My doctor won't let me flip over into SOC because he won't treat me with my immune system in this shape. But....I'm checking. I don't know at this point and if anyone has any suggestions, I'm open to it.
My CD4 counts have been 200, 160 and 180 and my lymphocytes have been at .3 and .4 I'm on antibiotics to keep me from getting an infection of any kind. I've been trying to understand the implications of my CD4 counts other than my treatment team telling me how serious this is supposed to be and I'm just not grasping it yet. I *feel* fine, you know?
I confess it's all a little surreal at this point. That's really all I've got right now.
Trish
My CD4 counts that monitor my immune system were too low and they lymphocyte counts never recovered enough so everyone on the trial in my position has had their treatment stopped permanently. I found out yesterday around 4pm and I've just been in a bit too much shock and still am. I wasn't expecting this at all.
I just started Week 34 and I went UND at 6 weeks. My VL was 217 at 4 weeks. I've been on 75% of interferon for about most of 10 weeks now since about Week 25. One week of ribavirin reduction at Week 15.
I just started the neupogen last week. I begin to wonder if there would have been a difference if they'd have let me start the neupogen earlier.
I guess the rumours that have been floating around are true and it's not looking good for R1626 going forward. They did have someone die on the trial and someone has fallen quite ill and I guess that's as much risk as this trial incurs now and they've pulled us riskier people off.
I don't know what my options are really. I'm processing and not coming up with much, can't say that I'm really able to think clearly. My doctor won't let me flip over into SOC because he won't treat me with my immune system in this shape. But....I'm checking. I don't know at this point and if anyone has any suggestions, I'm open to it.
My CD4 counts have been 200, 160 and 180 and my lymphocytes have been at .3 and .4 I'm on antibiotics to keep me from getting an infection of any kind. I've been trying to understand the implications of my CD4 counts other than my treatment team telling me how serious this is supposed to be and I'm just not grasping it yet. I *feel* fine, you know?
I confess it's all a little surreal at this point. That's really all I've got right now.
Trish
I'm busy proving that your thyroid problem means SVR so hang in there! If I say it, it must be so as you know because I am so rarely rarely wrong! ;)
I too think it's time to just put the stuff away and just go go go get back to life my friend. Too many people are rooting too hard for you for you not to already have SVR.
Like I told you - even if you finished it still is a chore to put the meds down - when you want something so bad it's just hard to stop.
You have shown us all what a warrior you are. Some people whine and cry and make such a big scene for so little - but you, never ever did that and THAT is a true inspiration to others. You gotta know how many people will now stand strong and have courage in the face of hard times - all because of YOU.
Continue to be strong. You ARE the warrior - don't ever forget it for a minute.
deb
I too think it's time to just put the stuff away and just go go go get back to life my friend. Too many people are rooting too hard for you for you not to already have SVR.
Like I told you - even if you finished it still is a chore to put the meds down - when you want something so bad it's just hard to stop.
You have shown us all what a warrior you are. Some people whine and cry and make such a big scene for so little - but you, never ever did that and THAT is a true inspiration to others. You gotta know how many people will now stand strong and have courage in the face of hard times - all because of YOU.
Continue to be strong. You ARE the warrior - don't ever forget it for a minute.
deb
Are you saying that someone on a VErtex trial GOT Procrit and Neupogen, or just needed it. I thought they didn't allow them in Telaprevir studies.
frijole
frijole
Trish,
I just so this, I am so sorry!!!! I dont even know what to say.. I am sorry....
peace
rita
I just so this, I am so sorry!!!! I dont even know what to say.. I am sorry....
peace
rita
On the Vertex Prove2 trial that I was on there was a guy who was sick all the way through. He got dose reductions to 135mg peginf. and 600mg riba most of the way and also needed procrit and neupogen. He did 39 weeks treatment before he threw in the towel. He worked it out as 3 weeks to UND plus 36 weeks (Drusano study). So for you it would be 6 weeks to UND plus 36 = 42 weeks. He got his SVR. Could you make it to 42 weeks with procrit and neupogen?
dointime
dointime
Well color me a sceptic but I just don't trust the assumption that the trial doctors do what is best for the patient. They are paid to do what is best for the drug company and the aims of the trial.
You obviously do have health issues, but who doesn't on tx? I'd try to find a doctor who would give you an independent 2nd opinion fast, and who would be confident and expert enough to take you through to 48 weeks if that were at all feasible.
I know that by 34 weeks we all feel very drained and low and there is nothing more appealing than the idea of stopping the drugs. But just make sure if you do stop that it's really unavoidable because of your health, and not just some line in the sand drawn arbitrarily by the drug company.
Good luck,
dointime
You obviously do have health issues, but who doesn't on tx? I'd try to find a doctor who would give you an independent 2nd opinion fast, and who would be confident and expert enough to take you through to 48 weeks if that were at all feasible.
I know that by 34 weeks we all feel very drained and low and there is nothing more appealing than the idea of stopping the drugs. But just make sure if you do stop that it's really unavoidable because of your health, and not just some line in the sand drawn arbitrarily by the drug company.
Good luck,
dointime
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