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
Thanks for the note, merryBe, appreciated. I'm not co-infected. I have HCV only. I only included that reference as the only place I really found CD4 information was in reference to HIV/AIDS. I'm sure I'll do the woulda, coulda shoulda's from time to time but trying hard not to do that to myself and to stay focused on those positives while I wait out the PCR results.
Hope you are keeping your head above water on your tx, merryBe. Take care.
Trish
Hope you are keeping your head above water on your tx, merryBe. Take care.
Trish
I hope you do really well sweetie...let's keep thinging positive. Half the people on the new drug treated half the time and did well...you went longer still. Pleanty to be hopeful for.
the CD$ could have been up from a cold or any number of viruses, but if you are HIV coinfected then they don't want you that low cause real scary other infections can creep in...so I think maybe it was the safe call for you.. The idea is not to kill the patient in the process of trying to cure them...so there will always be those judgments we may not understand or agree with.
anyway, I still think your glass looks way more than half full.
prayers and well wishes.
mb
the CD$ could have been up from a cold or any number of viruses, but if you are HIV coinfected then they don't want you that low cause real scary other infections can creep in...so I think maybe it was the safe call for you.. The idea is not to kill the patient in the process of trying to cure them...so there will always be those judgments we may not understand or agree with.
anyway, I still think your glass looks way more than half full.
prayers and well wishes.
mb
I sleuthed and sleuthed and couldn't find a *perfect* comparison for SVR odds for you because your treatment was so specific and not like any studied yet... ( ...well, until your ex-study is complete, that is...) But thought I'd paste this link here because I think it would give any RVR Geno 1 who did shortened tx some hope. Even though you were UND *maybe* a few weeks later than "true" RVR I believe there is a lot to be said for your tx (especially because you eradicated not one but two genotypes, correct?)
The article basically says tx for Geno 1's for total of 24 weeks SOC has pretty high SVR rates...
Again, not an exact comparison... but to give you some perspective... I find this study very interesting and very exciting!
pK
http://hivandhepatitis.com/hep_c/news/2008/101408_b.html
The article basically says tx for Geno 1's for total of 24 weeks SOC has pretty high SVR rates...
Again, not an exact comparison... but to give you some perspective... I find this study very interesting and very exciting!
pK
http://hivandhepatitis.com/hep_c/news/2008/101408_b.html
Trish, here's hoping you stay UND and go on to SVR. I'm pulling for you, but had no experience to relay on the matter. You've got the right attitude, sometimes you just have to roll with it, and see what happens. Live to fight another day if necessary.....
Best of luck as you move forward with your life for now!
cathy
Best of luck as you move forward with your life for now!
cathy
Tallahassee and Elaine and Ladywhy and rita (hugs to all of you :)...thank you for the encouragement. :) It's been a helluva rollercoaster the last few days and it always helps to come in here and read and get strengthened.
Jim....thanks for weighing in, your opinion is something I highly value and it helps me think....and calms me. You have been part of my treatment team whether you knew it or not. Lousy pay though, eh? :) Gratitude doesn't pay the bills .. I just hope it matters to know how much of a positive difference it makes to have you onboard. Words are so weak sometimes.
Frijole and alagirl.....thanks for the backup information and additional perspective. That was the impression I was getting too from reading different things and that I was heading into this unknown risk zone and not something I wanted to play with. Thanks for being there with your own perspectives and information, it has helped.
dointime ... thanks for putting out an alternate perspective and daring to beat a different drum. We need those people who question so that we can make sure we're on the right track and your questioning just cements that for me. I didn't "throw in the towel" or get "treatment weary". I was in full fighting mode and I was prepared to go the distance and had even been entertaining extending lately because of the dosage reductions. As far as blindly accepting what the trial team is telling me .. well....lol ... I haven't really done that all along and I've fought to push the limits of the trial as much as I could to get my rescue drugs to keep me on track within trial parameters. I've been a pain in the a$$. :)
I did my research on this, asked about being flipped over to SOC, considered going for the second opinion and after reading up on CD4's and the risks when they get low ..figured it's just time to accept this is it. maybe you call that throwing in the towel. I call it accepting my reality. This was not an easy place to come to and if I thought I should keep fighting it, I would. I think I'd be crossing the line into reckless and I have three kids who deserve better than that. So this is where I stop.
nygirl7....Deb.....what do I say to you. You have become a cherished friend. Thanks so much for your passion and compassion in building me up and making sure I'm okay. So I just want to tell you that I AM okay. You can relax. :) The only stats that matter at this point are my own so I'm going to wait out my PCR's and see how it goes. I'm not going to worry about *anything* before it's time. Not a thing. It's ALL out of my hands now. I'm UND at the moment and will take each PCR as it comes now. As for warrior....well Deb ... I don't hold a candle to you, gong 72 weeks with all you endured both in public and in private. But thanks anyway. :)
I'll post my PCR's as they come. Thank you *all* for being there. I would NOT have made it through the last few days without your support. I treasure all of you.
Alrighty then ... there are all of YOU who are considering treatment, starting treatment, enduring treatment, waiting for results, watching and waiting while you live with and manage your HCV and those who are just learning they have HCV ...lots to focus on here on the forum. Lots to do.
Hanging in there and hoping the very best for all of you.
Trish
Jim....thanks for weighing in, your opinion is something I highly value and it helps me think....and calms me. You have been part of my treatment team whether you knew it or not. Lousy pay though, eh? :) Gratitude doesn't pay the bills .. I just hope it matters to know how much of a positive difference it makes to have you onboard. Words are so weak sometimes.
Frijole and alagirl.....thanks for the backup information and additional perspective. That was the impression I was getting too from reading different things and that I was heading into this unknown risk zone and not something I wanted to play with. Thanks for being there with your own perspectives and information, it has helped.
dointime ... thanks for putting out an alternate perspective and daring to beat a different drum. We need those people who question so that we can make sure we're on the right track and your questioning just cements that for me. I didn't "throw in the towel" or get "treatment weary". I was in full fighting mode and I was prepared to go the distance and had even been entertaining extending lately because of the dosage reductions. As far as blindly accepting what the trial team is telling me .. well....lol ... I haven't really done that all along and I've fought to push the limits of the trial as much as I could to get my rescue drugs to keep me on track within trial parameters. I've been a pain in the a$$. :)
I did my research on this, asked about being flipped over to SOC, considered going for the second opinion and after reading up on CD4's and the risks when they get low ..figured it's just time to accept this is it. maybe you call that throwing in the towel. I call it accepting my reality. This was not an easy place to come to and if I thought I should keep fighting it, I would. I think I'd be crossing the line into reckless and I have three kids who deserve better than that. So this is where I stop.
nygirl7....Deb.....what do I say to you. You have become a cherished friend. Thanks so much for your passion and compassion in building me up and making sure I'm okay. So I just want to tell you that I AM okay. You can relax. :) The only stats that matter at this point are my own so I'm going to wait out my PCR's and see how it goes. I'm not going to worry about *anything* before it's time. Not a thing. It's ALL out of my hands now. I'm UND at the moment and will take each PCR as it comes now. As for warrior....well Deb ... I don't hold a candle to you, gong 72 weeks with all you endured both in public and in private. But thanks anyway. :)
I'll post my PCR's as they come. Thank you *all* for being there. I would NOT have made it through the last few days without your support. I treasure all of you.
Alrighty then ... there are all of YOU who are considering treatment, starting treatment, enduring treatment, waiting for results, watching and waiting while you live with and manage your HCV and those who are just learning they have HCV ...lots to focus on here on the forum. Lots to do.
Hanging in there and hoping the very best for all of you.
Trish
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