Aa
Need Advice on Tx course
I know many of you have done tx 2, 3 times and have a lot of experience, so I trust your judgements. I really need some help here.
I recently had my 12 week PCR. I was previously 55,967,000 and dropped to 19,000. That is a great drop and I am pleased. ( I am 1A, so 48 weeks required )But now, all my doctor agree that 18 months, possibly longer GGGRRR> of tx will be required.
Now here's the part that is confusing. Early into the tx,like the 3rd week my PCR dropped to 303,000 which means 9 weeks later ( at the 12 week mark )I didn't really drop that much.
I e-mailed Dr. Cecil and asked for his advice. His opinion is that I need double doses of Peg or I should switch to daily infergen.
I am also having progression in my cryo. So, I will be seeing another specialist about possibly adding another drug to tx the cryo during the Peg treatmemts.
My questions to slow responders > would it be beneficial to do double doses of Peg at this point or switch to infergen? My doctors seem to think I should continue the current 180 per week and just extend the tx.
Also Dave, I know you did that additional drug for your cryo and I would like to know at what point into tx did you clear the HCV and cryo? were you also a late responder to the Peg? And do I need to be clear of HCV to start the rutuxin? The Hemo said she has mixed feelings on using this drug, but we will talk about it if I still have cryo at 6 months. meanwhile, I am getting a second opinion on the cryo and doing a lot of praying.
Thanks ahead of time for all your resposes. ((( Sue ))
I recently had my 12 week PCR. I was previously 55,967,000 and dropped to 19,000. That is a great drop and I am pleased. ( I am 1A, so 48 weeks required )But now, all my doctor agree that 18 months, possibly longer GGGRRR> of tx will be required.
Now here's the part that is confusing. Early into the tx,like the 3rd week my PCR dropped to 303,000 which means 9 weeks later ( at the 12 week mark )I didn't really drop that much.
I e-mailed Dr. Cecil and asked for his advice. His opinion is that I need double doses of Peg or I should switch to daily infergen.
I am also having progression in my cryo. So, I will be seeing another specialist about possibly adding another drug to tx the cryo during the Peg treatmemts.
My questions to slow responders > would it be beneficial to do double doses of Peg at this point or switch to infergen? My doctors seem to think I should continue the current 180 per week and just extend the tx.
Also Dave, I know you did that additional drug for your cryo and I would like to know at what point into tx did you clear the HCV and cryo? were you also a late responder to the Peg? And do I need to be clear of HCV to start the rutuxin? The Hemo said she has mixed feelings on using this drug, but we will talk about it if I still have cryo at 6 months. meanwhile, I am getting a second opinion on the cryo and doing a lot of praying.
Thanks ahead of time for all your resposes. ((( Sue ))
I am so glad to hear from you! I guess you're probably out enjoying life and catching those van Gogh exhibits? Anyway, don't be a stranger! Your input has always been most valuable.
Lauren
Lauren
TN - as always, great references - you are a master at locating relevant information. Hope post-tx life is treating you well.
Sue: from the second line of the table TN posted, it looks like your initial drop was rapid enough that you're currently looking at about a 60% chance of SVR (log(55967000)=7.7 and log(303000)=5.4 so you had a 2.3 drop by 3 weeks). This is getting pretty close to the 70% you could expect if you had come up undetectable at 12. You should probably keep digging to see how likely you are to recoup that 10% by adding 6 months. My own bias is that tx is the best option we've got but trying to force a good result by persistence is sort of like forcing a frozen screw with a screwdriver that's the wrong size - damage is more likely than success.
Sue: from the second line of the table TN posted, it looks like your initial drop was rapid enough that you're currently looking at about a 60% chance of SVR (log(55967000)=7.7 and log(303000)=5.4 so you had a 2.3 drop by 3 weeks). This is getting pretty close to the 70% you could expect if you had come up undetectable at 12. You should probably keep digging to see how likely you are to recoup that 10% by adding 6 months. My own bias is that tx is the best option we've got but trying to force a good result by persistence is sort of like forcing a frozen screw with a screwdriver that's the wrong size - damage is more likely than success.
Thank you for the kind words and for asking about me.
I hope all is doing well in your folks necks-of-the-woods and that 'willing's '1-person post-tx study is coming along nicely.
I've jumped back into life head first and it has left little time for things Hep C-related. I still try and check on the latest releases of info and studies and continue peek in here from time-to-time. As far as my physical recovery goes, I'm 4 1/2 months post-tx now and only recently have my white counts returned to normal range. And I'm one of the 15-20% who take a long time for the red counts to rebound (5-10% never do), so at this point I'm still slightly anemic - though the counts are still moving upward, just at a snail's-neck pace. Other than that particular problem, some degraded eyesight and very occasional and intermittent bone pain in my hip, there haven't been too many lingering physical manifestations from the tx.
As far as the Reddy study, I'm cautious to draw a true direct parallel to BostonGirl's case since she has tx'ed prior (though I don't know if she relapsed or was a non-responder) and the patients used here were tx-naive. But in the attempt to make this study useful in her particular case, I chose to use the data from the 'Week 12' area of the chart because, even though she reached the >2 log drop by Week 4, she currently falls into the >2 category for Week 12 by virture of her PCR not showing clear at that later point in time. With that being the case, she then would have a 60% chance of her Week 24 PCR being clear and an overall 26% chance for SVR (based upon a 48 week tx).
Add onto all of this that she's tx'ed unsuccesfully twice before and has cryo - and that 26% SVR figure may be optomistic, at best (unless her prior tx'ing was sub-optimal due to initial under-dosing, dose reductions, etc - in which case she could effectively be considered 'tx-naive' to a full-dose tx regime). So, being that I'm from the school of "tx once, tx best-you-can", I think 72 weeks of closely monitored tx would be her best shot at waving goodbye to this invader once-and-for all.
TnHepGuy
I hope all is doing well in your folks necks-of-the-woods and that 'willing's '1-person post-tx study is coming along nicely.
I've jumped back into life head first and it has left little time for things Hep C-related. I still try and check on the latest releases of info and studies and continue peek in here from time-to-time. As far as my physical recovery goes, I'm 4 1/2 months post-tx now and only recently have my white counts returned to normal range. And I'm one of the 15-20% who take a long time for the red counts to rebound (5-10% never do), so at this point I'm still slightly anemic - though the counts are still moving upward, just at a snail's-neck pace. Other than that particular problem, some degraded eyesight and very occasional and intermittent bone pain in my hip, there haven't been too many lingering physical manifestations from the tx.
As far as the Reddy study, I'm cautious to draw a true direct parallel to BostonGirl's case since she has tx'ed prior (though I don't know if she relapsed or was a non-responder) and the patients used here were tx-naive. But in the attempt to make this study useful in her particular case, I chose to use the data from the 'Week 12' area of the chart because, even though she reached the >2 log drop by Week 4, she currently falls into the >2 category for Week 12 by virture of her PCR not showing clear at that later point in time. With that being the case, she then would have a 60% chance of her Week 24 PCR being clear and an overall 26% chance for SVR (based upon a 48 week tx).
Add onto all of this that she's tx'ed unsuccesfully twice before and has cryo - and that 26% SVR figure may be optomistic, at best (unless her prior tx'ing was sub-optimal due to initial under-dosing, dose reductions, etc - in which case she could effectively be considered 'tx-naive' to a full-dose tx regime). So, being that I'm from the school of "tx once, tx best-you-can", I think 72 weeks of closely monitored tx would be her best shot at waving goodbye to this invader once-and-for all.
TnHepGuy
It appears that this K. Reddy may be the same guy who did my biopsy and started my treatment- and later recommended the 48wk titrated extension. Does he work at U of Penn? It's not important, just interesting to me. Later, Dave
twotells - I believe it is : the presenter of that session is on the faculty at U.Penn
tn: the irritating part, for me at least, is that improving patients' perspective of where they are on the treatment landscape is a problem with a relatively simple solution - better data management - yet it gets very little attention. Designing more effective drugs or understanding the mechanisms of response await significant advances in basic science, but giving patients a realistic sense of their likely outcome could be addressed today with as simple a solution as requiring Roche and Schering to maintain publicly accessible databases where users could, voluntarily and anonymously, choose to deposit all test results throughout treatment. Then instead of estimating your outcome on the basis of scarce data, incompletely reported, you'd have the benefit of the experience of the thousands of patients with a profile similar to yours who had preceded you (if you can't be an organ donor, be a data donor..)
tn: the irritating part, for me at least, is that improving patients' perspective of where they are on the treatment landscape is a problem with a relatively simple solution - better data management - yet it gets very little attention. Designing more effective drugs or understanding the mechanisms of response await significant advances in basic science, but giving patients a realistic sense of their likely outcome could be addressed today with as simple a solution as requiring Roche and Schering to maintain publicly accessible databases where users could, voluntarily and anonymously, choose to deposit all test results throughout treatment. Then instead of estimating your outcome on the basis of scarce data, incompletely reported, you'd have the benefit of the experience of the thousands of patients with a profile similar to yours who had preceded you (if you can't be an organ donor, be a data donor..)
I would like to thank all of you who responded to this question. It is a bit complicated and I am still sorting through all the data. There's a lot of great information at this site and I really do appreciate all who post the studies, articles, and give their personal opinions. I thank you all from the bottom of my heart.
As far as treating prior to this go round > No, I have never treated with any interferons. This is my first shot at it. I have been on full dosages the entire 14 weeks, never reduced. I was put on procrit instead. I refused reductions, so they gave me procrit right away.
When first diagnosed with Hep C in 2002, I was doing alternative tx's, for a couple of years ( with great success ) But by the end of 2004 my viral load skyrocketed, I got really sick and everything else just seemed to go down hill from there. My herbal regimen did not change, I was eating organic, kept a low body weight > doing all the right stuff, but it just wasn't working anymore for me.
I will keep you all posted on what decisions we have made. Right now I am continuing the full dose Peg tx and setting my goal for at least 72 weeks. I only want to do this once.
Thanks again everyone and God Bless you all for this forum.
(((((( Sue )))))))
As far as treating prior to this go round > No, I have never treated with any interferons. This is my first shot at it. I have been on full dosages the entire 14 weeks, never reduced. I was put on procrit instead. I refused reductions, so they gave me procrit right away.
When first diagnosed with Hep C in 2002, I was doing alternative tx's, for a couple of years ( with great success ) But by the end of 2004 my viral load skyrocketed, I got really sick and everything else just seemed to go down hill from there. My herbal regimen did not change, I was eating organic, kept a low body weight > doing all the right stuff, but it just wasn't working anymore for me.
I will keep you all posted on what decisions we have made. Right now I am continuing the full dose Peg tx and setting my goal for at least 72 weeks. I only want to do this once.
Thanks again everyone and God Bless you all for this forum.
(((((( Sue )))))))
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