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
sorry - but really, what I mean is - this need not at all be bad news; I think/hope you're going to be fine.
- r1626 has a very strong anti-viral profile; 1000mg should have been plenty
- your w6 UND indicates a clear response and you had the benefit of plenty of rbv
- your thyroid problems are at least circumstantial evidence that even at half dose you were responding strongly to the IFN (this is anecdotal, but I believe everyone who has experienced thyroid problems has SVRrd)
Pushing for more ifn given the CD4 and thyroid issues you're experiencing seems risky. I'd opt for taking a deep breath, focusing on the rest of life and waiting for the dust to settle.
There's a very good chance you paid your dues and got SVR. You'll know by Jan. If the fates turn out to not be kindly disposed, the outlook is still not too bad:
- R1626 has no detectable escape mutations so you haven't eliminated ns5b follow ons like r7128
- you *know* you respond strongly to ifn/rbv
- the ns3 meds that far away
- r1626 has a very strong anti-viral profile; 1000mg should have been plenty
- your w6 UND indicates a clear response and you had the benefit of plenty of rbv
- your thyroid problems are at least circumstantial evidence that even at half dose you were responding strongly to the IFN (this is anecdotal, but I believe everyone who has experienced thyroid problems has SVRrd)
Pushing for more ifn given the CD4 and thyroid issues you're experiencing seems risky. I'd opt for taking a deep breath, focusing on the rest of life and waiting for the dust to settle.
There's a very good chance you paid your dues and got SVR. You'll know by Jan. If the fates turn out to not be kindly disposed, the outlook is still not too bad:
- R1626 has no detectable escape mutations so you haven't eliminated ns5b follow ons like r7128
- you *know* you respond strongly to ifn/rbv
- the ns3 meds that far away
Oh my goodness... What a shocking turn of events!
After typing this, I'll do some sleuthing on internet and hopefully find some studies with good SVR odds for you!
I have a quick question for you: Do you know WHICH interferon you were taking? Was it peginterferon alpha-2a (Pegasys) or alpha-2b (Pegintron)? I think it's important to know because 90 mcg of alpha 2b might actually be 100 percent correct dosage for your body weight!
Trish, I'm devastated for you, but if they have had one person die in the trial, then I think they are doing the absolute right thing by taking you off the meds... That is very serious!
When I was in ER for the second time during my tx, I made the decision right there and then that I could not continue tx and I was devastated, crying... The ER doctor told me "You never know, you could have beaten it permanently." I was stunned! "Huh, what?? No way, not with only 7 injections and 5 weeks of riba..." I thought he was only saying it to get me to stop blubbering :-) Well, guess what? He was right!! I found out last night that I did reach SVR... Studies showed 33 percent chance with my genotype and length of my tx. I'd hands down give you MUCH better odds than that my friend!!! Triple therapy, very early response and 34 weeks... You can't discount any of that!
Don't give up hope and try not to have regrets... You gave it your all and fought with all your might! But, preventing serious injury to yourself is first and foremost!!! Please don't lose sight of that...
Will send you anything I find, okay?
Your pal, pK
After typing this, I'll do some sleuthing on internet and hopefully find some studies with good SVR odds for you!
I have a quick question for you: Do you know WHICH interferon you were taking? Was it peginterferon alpha-2a (Pegasys) or alpha-2b (Pegintron)? I think it's important to know because 90 mcg of alpha 2b might actually be 100 percent correct dosage for your body weight!
Trish, I'm devastated for you, but if they have had one person die in the trial, then I think they are doing the absolute right thing by taking you off the meds... That is very serious!
When I was in ER for the second time during my tx, I made the decision right there and then that I could not continue tx and I was devastated, crying... The ER doctor told me "You never know, you could have beaten it permanently." I was stunned! "Huh, what?? No way, not with only 7 injections and 5 weeks of riba..." I thought he was only saying it to get me to stop blubbering :-) Well, guess what? He was right!! I found out last night that I did reach SVR... Studies showed 33 percent chance with my genotype and length of my tx. I'd hands down give you MUCH better odds than that my friend!!! Triple therapy, very early response and 34 weeks... You can't discount any of that!
Don't give up hope and try not to have regrets... You gave it your all and fought with all your might! But, preventing serious injury to yourself is first and foremost!!! Please don't lose sight of that...
Will send you anything I find, okay?
Your pal, pK
Once again Trish I'm sorry to hear this news. We started on the same day, same trial and as it turns out the same tx arm. I hope you soon get clarity around how to proceed from this point. If tx is out of the question for you at this stage then maybe you could round off with therapeutic dosing of PPC. I know there's no solid evidence but it may have an added benefit of helping you move to the next point while providing a little additional hope.
My calcaulation has you at 28 weeks clear and what weight can we give to 2000mg daily of R1626 for 12 weeks? I think you have a realsonable at SVR. R1626 is still a kick *** drug and in my opinion Roche's decision to put a half dose of peg in the mix was a fundamental error as well as the procrastination and uncertainty around resue drugs. This drug should have been up there competing with telaprevir right now, however I suspect greed got in the way.
Stay in touch Trish and good luck with the decisions you need to make and subsequent path. Regards Emi oo
My calcaulation has you at 28 weeks clear and what weight can we give to 2000mg daily of R1626 for 12 weeks? I think you have a realsonable at SVR. R1626 is still a kick *** drug and in my opinion Roche's decision to put a half dose of peg in the mix was a fundamental error as well as the procrastination and uncertainty around resue drugs. This drug should have been up there competing with telaprevir right now, however I suspect greed got in the way.
Stay in touch Trish and good luck with the decisions you need to make and subsequent path. Regards Emi oo
Hey! in da boat, well row boat that is, here have an ore, now to get from point A to point B we need to row togedder, ok. We’ll start off slow and stay the course for due north. Ok, you start first… don’t look at me like dat, we have to get away form the dock, (eye brows up) looking side ways, go head pull da roe. Dare ya go you did great! Ok here we go… one and two, one and two, togedder now, so what’s been going on, how come they stopped the treatment? Yes, yes, slow down your going to fast… ooook, ok but slow down a bit, well ok that fine, its better to stop than continue treatment and cause all sorts of problems more so than what your experiencing now and there is always another day. Ease up a little… yeah I know its easer said than done but its going to get even harder if you don’t stop rowing. Big HUGS to you and am sorry to hear this. ;(
jasper
jasper
I'm so sorry to hear your news. Try to keep your chin up, it sounds quite possible that you will reach SVR anyway from the sound of your stats.
All the best
k
All the best
k
I just wanted to share that even though Trish had just heard her sad news. Early this morning I got on here and she was posting and helping people when she had a thread no one had posted on or seen yet.
Posting and not knowing what was going on with herself.
Trish, that is so not selfish.
You'll be fine, I know you will.
Remember you thought how you may not be in such good health in a few years and decided to tx ?
Let's Hope for :The Earlier, The Better
Early Response,The More Better
Early Withdrawal, The Most Better
It's Time to think about You !
Take a minute, hour, a whole day and look at the big picture.
Docs pulled you off, Why ? Your health is at risk here.
You trusted the docs to go into this and I hope you trust they pulled you for a reason.
Listen to your intuition.Your body should know what is enough.
2nd. opinions are a good thing like jmjm said, or Andiamo said,you have a good chance you've SVR'D !
I'm saying this because you are an unselfish person and also take the time to think, think some more before you make THAT DECISION !
God Bless,
Tammy
Posting and not knowing what was going on with herself.
Trish, that is so not selfish.
You'll be fine, I know you will.
Remember you thought how you may not be in such good health in a few years and decided to tx ?
Let's Hope for :The Earlier, The Better
Early Response,The More Better
Early Withdrawal, The Most Better
It's Time to think about You !
Take a minute, hour, a whole day and look at the big picture.
Docs pulled you off, Why ? Your health is at risk here.
You trusted the docs to go into this and I hope you trust they pulled you for a reason.
Listen to your intuition.Your body should know what is enough.
2nd. opinions are a good thing like jmjm said, or Andiamo said,you have a good chance you've SVR'D !
I'm saying this because you are an unselfish person and also take the time to think, think some more before you make THAT DECISION !
God Bless,
Tammy
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