Aa
Great news on biopsy, but now I am really confused as to what to do about treatment.
Finally liver biopsy back and time to see the Hepatologist this past Monday. I immediately asked for all test results, and even before seeing the Hepatologist got my hands on the biopsy report. Imagine my surprise to see "Grade 2, Stage 2 Metavir score A-1, F1. I about jumped out of my seat and acted like a complete fool! I had in no way expected this, and had been preparing to treat immediately since the Hepatologist had pretty much informed me he thought I had cirrhosis from a low platelet count and what he thought were spider nouvi.Not only that, the biopsy report states porphyria Cutanea tarde could not be determined from this biopsy will forward to quantivie iron determination as requested which I find interesting since I had this 19 years ago.
When going to the appointment with the Hepatologist I had resigned myself to starting treatment almost immediately, now I find I have options. According to the Hepatologist it is up to me when to treat. Now, or I can wait until the new drugs are here. Results were good but at some point I am going to have to treat. His best estimation of when drugs like Teleprivir or Boceprivir would be available would be 3-5 years. I honestly was so awestruck and unexpecting this I had no idea what I wanted to do now! He ended up sending me out of the office with a follow up in 3 months to let me think about it. He suggests that maybe I go ahead and try 4 weeks of treatment, and he says that being geno type 1a, I will know in 4 weeks if I EVR if I have a good chance or not of succeeding, and of course by 12 weeks knowing whether it is worth it or not at all, and then I could stop and wait if need be for the new PI's.
I have been trying to weigh everything here because of my home situation and of course want to give myself the best chance to SVR I can if I try. Some of the questions I have are:
Is there anyway of knowing how quickly liver disease is moving? If I waited for 3-5 years would this put me into stage 3 or even 4?? And then have to have another liver biopsy before treating?
I am 56 now, so 3-5 years from now I could possibly be 61 and would that make SVR more difficult?
I am possibly the healthiest I have ever been right now, and no other health problems, so waiting I might not be that healthy 3-5 years from now so should I treat now?
Is there any chance that Teleprivir could hit the market early? Or any chance of using it without FDA approval?
How long does it take to set up treatment should I decide to treat now, that is with insurance company approval or without insurance company approval? Hepatologist's secretary told me not to worry about this, as if I decide to treat they will work it out some how, but I would hate to be ready and then not be able to treat.
So many questions running thru my mind now, any opinions?
thanks,
LD
When going to the appointment with the Hepatologist I had resigned myself to starting treatment almost immediately, now I find I have options. According to the Hepatologist it is up to me when to treat. Now, or I can wait until the new drugs are here. Results were good but at some point I am going to have to treat. His best estimation of when drugs like Teleprivir or Boceprivir would be available would be 3-5 years. I honestly was so awestruck and unexpecting this I had no idea what I wanted to do now! He ended up sending me out of the office with a follow up in 3 months to let me think about it. He suggests that maybe I go ahead and try 4 weeks of treatment, and he says that being geno type 1a, I will know in 4 weeks if I EVR if I have a good chance or not of succeeding, and of course by 12 weeks knowing whether it is worth it or not at all, and then I could stop and wait if need be for the new PI's.
I have been trying to weigh everything here because of my home situation and of course want to give myself the best chance to SVR I can if I try. Some of the questions I have are:
Is there anyway of knowing how quickly liver disease is moving? If I waited for 3-5 years would this put me into stage 3 or even 4?? And then have to have another liver biopsy before treating?
I am 56 now, so 3-5 years from now I could possibly be 61 and would that make SVR more difficult?
I am possibly the healthiest I have ever been right now, and no other health problems, so waiting I might not be that healthy 3-5 years from now so should I treat now?
Is there any chance that Teleprivir could hit the market early? Or any chance of using it without FDA approval?
How long does it take to set up treatment should I decide to treat now, that is with insurance company approval or without insurance company approval? Hepatologist's secretary told me not to worry about this, as if I decide to treat they will work it out some how, but I would hate to be ready and then not be able to treat.
So many questions running thru my mind now, any opinions?
thanks,
LD
I know all about it - I treated 3 times and my last treatment lasted 73 weeks.
I would stop at 4 weeks if not undetectable and wait for a PI. If I was undetectable I'd do the 48 weeks. It's just the way I'd do it. I'm not saying it's right because I don't know that much. I guess you do.
Mike
I would stop at 4 weeks if not undetectable and wait for a PI. If I was undetectable I'd do the 48 weeks. It's just the way I'd do it. I'm not saying it's right because I don't know that much. I guess you do.
Mike
I would probably treat and if I wasn't undetectable at 4 weeks I'd quit. I am really impatient so I'd give it a try. Then again, my outlook may be somewhat jaundiced.
Mike
Mike
I'm a little stunned by CuredForLife's alarmist position. I'm guessing that she stocked up on Tamiflu recently. :)
It flies in the face of the views of my highly-experienced hepatologist. He attends every international HCV conference around, unlike me.
Yes, things CAN go downhill quickly and that is a danger. That said, if you're fortunate to be diagnosed (unlike most people who have it), then you certainly have the attractive option of watching your liver carefully and living a healthy lifestyle.
I've had chronic HCV for at least forty years, maybe more. I presumably started as a stage zero in 1969, and in 2001, I was still a stage zero. It's not always but usually slow-moving.
It's not like the measles, which in the last 150 years is estimated to have killed about 200 million people worldwide, including two-thirds of Cuban natives who had previously survived smallpox. HCV has been around forever and is not a mass murderer. It may even afford some protection from yellow fever, which has often been deadly and epidemic. (IgI jigust migade thigat igup.)
As for Moa's last comments, I've seen people here who treated unsuccessfully on SOC more than once (even up to eight times), yet went on to SVR despite being unable to do that on SOC. Some re-treaters currently on triple therapy cleared at two weeks.
The thought can't help popping into my head that if the hard-to-treat are getting spectacular results, why wouldn't naive treaters opt for this as well?
It's true we don't know the long-term side effects of the PI's but neither do we adequately know this about SOC. SOC isn't tried and true by very much, compared to the PI's.
It flies in the face of the views of my highly-experienced hepatologist. He attends every international HCV conference around, unlike me.
Yes, things CAN go downhill quickly and that is a danger. That said, if you're fortunate to be diagnosed (unlike most people who have it), then you certainly have the attractive option of watching your liver carefully and living a healthy lifestyle.
I've had chronic HCV for at least forty years, maybe more. I presumably started as a stage zero in 1969, and in 2001, I was still a stage zero. It's not always but usually slow-moving.
It's not like the measles, which in the last 150 years is estimated to have killed about 200 million people worldwide, including two-thirds of Cuban natives who had previously survived smallpox. HCV has been around forever and is not a mass murderer. It may even afford some protection from yellow fever, which has often been deadly and epidemic. (IgI jigust migade thigat igup.)
As for Moa's last comments, I've seen people here who treated unsuccessfully on SOC more than once (even up to eight times), yet went on to SVR despite being unable to do that on SOC. Some re-treaters currently on triple therapy cleared at two weeks.
The thought can't help popping into my head that if the hard-to-treat are getting spectacular results, why wouldn't naive treaters opt for this as well?
It's true we don't know the long-term side effects of the PI's but neither do we adequately know this about SOC. SOC isn't tried and true by very much, compared to the PI's.
Forgot to add that 12 weeks isn't a good test for side effects either. Many of us suffer much more later in treatment, especially after week 24 as the body wears down. And then there are the potential longer term side effects (post treatment) that often get ignored in these types of discussions. For all these reasons, I really think the idea of "try and see if you like it" is a bad one. I'd dig a bit deeper than that for a reason to get going.
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