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 had none of this uncertainty when I got my biopsy results. I was grade 3 stage 3 and my doctor was adamant that I treat immediately. However, I believe I would have treated right away even if only at stage 2 As nygirl said, "One benefit of treating at stage 2 is if it does not work you have ample time to change strategies and retreat before stage 4."
Good luck, whatever you decide.
jd
Good luck, whatever you decide.
jd
ps One benefit of treating at stage 2 is if it does not work you have ample time to change strategies and retreat before stage 4. Treatment is a gamble at best and personally, I think having a little more wiggle room is a very very good thing. Of course I was already stage 3 and don't think I had time to wait at all and I just wanted this disease out of me no matter what as the concept of it eating my liver away was just not pleasant to me at all and freaked me out.
All debating aside it's up to you and you only if you think it's worth treating now as a stage 2 or risking moving it up to stage 3 or 4. Unfortunately, while it can take 20 years to become a stage 2 it can progress to stage 4 in just a few years - nobody can predict that and it's a gamble.
As for the new drugs - triple therapy can be shorter but harder and nobody is 100% sure that they will ever be approved. Personally for me combo treatment was hard enough.
If you do decide to watch and wait you are going to have to remember to do a lot of watching....it's not as if you can just stick your head in the sand and let it go.
Since you were already resigned to treatment my personal advice would be to go for it now while you have things set in motion. At week 4 see how you are responding. If it looks like you're really succeeding then go for it. Why wait until your liver has degenerated a couple more stages and it is harder to make sure you get all the virus?
As for the new drugs - triple therapy can be shorter but harder and nobody is 100% sure that they will ever be approved. Personally for me combo treatment was hard enough.
If you do decide to watch and wait you are going to have to remember to do a lot of watching....it's not as if you can just stick your head in the sand and let it go.
Since you were already resigned to treatment my personal advice would be to go for it now while you have things set in motion. At week 4 see how you are responding. If it looks like you're really succeeding then go for it. Why wait until your liver has degenerated a couple more stages and it is harder to make sure you get all the virus?
I can empathize with the "damn the torpedoes and treat now" approach. That is basically what I did, but I felt I had to given the situation I was in. I would not do any differently now if I had it to do over again.
For a case of genotype one,liver damage at stage two or less, working on original equipment (liver), and no particular reason to think the disease would progress rapidly, I would probably choose to wait. 12 or 24 weeks of treatment sounds a lot better than 48, 72, or 84 weeks of treatment. Not many geno 1 patients get off with the 24 week treatment.
For a case of genotype one,liver damage at stage two or less, working on original equipment (liver), and no particular reason to think the disease would progress rapidly, I would probably choose to wait. 12 or 24 weeks of treatment sounds a lot better than 48, 72, or 84 weeks of treatment. Not many geno 1 patients get off with the 24 week treatment.
Its easy to be pro exposure of interferon if you feel good after treatment.
After my first tx that lasted for 24 weeks i felt better than in 25 years both physically and mentally allthough I relapsed.
Thats what motivated me to do a second tx try, more agressiv both with doses and with double length of time .
Now 5months post i dont feel good at all not physically nor mentally.
I´m afraid this meds hasn`t been around so very long, so we still know all to little about its impact and long term effects if exposed to it longer times and with higher doses.
My old man used to say there aint no such thing as poison only poisonous doses.
If this doesn´t get better I´ll find it hard to be happy even if SVR which I will know if I am in a month.
Keep in mind that I was grade 1 stage 0 in my biopsy taken 2 months before second tx ,and I have had it for 36 years and been drinking heavily and taking lot of drugs but not any of it for the last 22 years.
I really hope I will feel as good or even better than after first tx and that it only will take a little longer this time compared with the shorter first one.
Its easy when you your self only have good experience after treatment to think that those how complain about problems long after treatment probably are a bunch of hypochondriacs.
I did but now my own experience this far are shutting that up!!
ca
After my first tx that lasted for 24 weeks i felt better than in 25 years both physically and mentally allthough I relapsed.
Thats what motivated me to do a second tx try, more agressiv both with doses and with double length of time .
Now 5months post i dont feel good at all not physically nor mentally.
I´m afraid this meds hasn`t been around so very long, so we still know all to little about its impact and long term effects if exposed to it longer times and with higher doses.
My old man used to say there aint no such thing as poison only poisonous doses.
If this doesn´t get better I´ll find it hard to be happy even if SVR which I will know if I am in a month.
Keep in mind that I was grade 1 stage 0 in my biopsy taken 2 months before second tx ,and I have had it for 36 years and been drinking heavily and taking lot of drugs but not any of it for the last 22 years.
I really hope I will feel as good or even better than after first tx and that it only will take a little longer this time compared with the shorter first one.
Its easy when you your self only have good experience after treatment to think that those how complain about problems long after treatment probably are a bunch of hypochondriacs.
I did but now my own experience this far are shutting that up!!
ca
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