Aa
Sould I seek a second opinion
Coming soon the all important 12 wk viral load. My doc is rec. stopping treatment if not undected. I am type 1, minor liver damage, started 1,700,000, 4 weeks 140,000, 8ks 4800. My doc is GI, I think he is the expect in the office for liver disease. But before I stop I'm thinking about getting a second decision by hepologist. My sense is people can clear later but tend to relapse over the long haul.
Good to see my doc listed on hep C central as one of a handful of docs who know this illness where I live. Helped increase my faith in his advice. I work with doctors, work with tests, see too often the mistakes they make, so I am not the most trusting. I'm also not the most optimistic person. I prepare myself for the worst, + at week 12, and hope for the best, undect at week 12. I get the results just a few steps from where I work. It will be hard to look at that lab result. I get it before my doctor does. It's nice to have that privacy when looking at this stuff.
Let's try to be positive until you get your result. You need to have a plan, but perhaps all the worry will be for naught! Good luck - Dave
Thanks so much, it makes sense to wait. Next friday I start my 12 week, so the following friday morning I will get my VL and should have the result by Tuesday following. I started out at 1,700,000 and went to 4800 at week8-9. My liver is good. Again your post was so very helpful. It goes with what my doc says.
Judy
Judy
Hope you make the cut at 12 weeks. Studies show those with <2Log drop in PCR don't have very good chances at all of attaining SVR. Waiting for the PI drugs might be advised. It all depends on your particular circumstances (liver condition, etc.). Your hepatologist should be able to guide you to a decision after the results are in. Mostly just want to wish you luck!
I noticed your white count tanked...you will get more of that with the new PI's.
when will you get your 12 wks results??
are you familiar with the interferon/insulin relationship?
pm me if you want more info.
when will you get your 12 wks results??
are you familiar with the interferon/insulin relationship?
pm me if you want more info.
Hi PC...HOPEFUL you won't have to even consider this, but if you do here's what you need to know.
You might cure that way, but you might not. Unless someone does extend tx there's not much of a chance when still infected at 12 weeks, and none at 24 wks without the extention, and even with ex tx it's a lot slimmer than the above numbers (57%????),
and I know, folks tried to get me to stop, but I was stage 3-4 and had to keep going. I didn't succeed, but at least I bought my liver some time. You don't need to buy time so the risk may outweigh the benefit for you.
the thing is, unless someone has done ex. tx it's hard to comment on this....I did 88 weeks...(and the riba takes months afterwards, and the blood take time to recover...so for all practical purposes I was sick and on chemo for 2 years.) so I will comment.
It was an ordeal and a half and has left me with permanent issues, some major such as full time body wide tremors.....oh joy!!
If I was stage 1, as you are, I would definitely wait for the PI, or at least see if you could get the new IL28b testing to see what your genetics are like...reason being, how you respond depends greatly upon those genetics, and also, the chatter is that the real window is 72 hrs, not 4 or 12 weeks....that the virus produces wild strains in a short time so that unless you get a real strong drop and go UND quickly the odds are slimmer than previously
thought. It's not the news one wants to hear, certainly, but had I not been in late stage, and knowing what I now know, I'd want to up those odds with the better things coming.
Also, don't take my word, google 72 hour mutation hcv and read what comes up
.
Also, there's no reason to believe that 57% number for extended treaters is accurate. They are saying the overall rate of success is higher than the average rate of success in those whose virus has resisted the treatment. I find this number suspect therefore and wonder how they arrived at it. They are basically saying ex. tx has 10% better odds...those weren't the numbers 2 years ago so I'm puzzled as to how they got that bump with no changes in SOC.
Also, I'm certain that the new treatment will include in a few years things like Inovio's non-toxic vaccine, or pills that help wipe out the virus in a day, (several being developed) meaning treatment times will be greatly reduced.
If you take that into consideration, you could be finishing treatment about the time something comes out that would have cut your time treating from 18 months to just 6.
For my money, I'd think long and hard before beating a dead horse that hard, should you not reach your goal.
I'd really think of it more as an opportunity to return to health, and wait to fight on a better day. Maybe think akin to "shall I fight in the muddy rain, or wait for the sun to dry up this battlefield so I can get and keep a foothold and really kick B. on this thing.
Since your liver has little to know damage you have lots of time and that is a luxury and gives you optimum options and the ability to really stragegize well and win the day.
My best to you.
mb
You might cure that way, but you might not. Unless someone does extend tx there's not much of a chance when still infected at 12 weeks, and none at 24 wks without the extention, and even with ex tx it's a lot slimmer than the above numbers (57%????),
and I know, folks tried to get me to stop, but I was stage 3-4 and had to keep going. I didn't succeed, but at least I bought my liver some time. You don't need to buy time so the risk may outweigh the benefit for you.
the thing is, unless someone has done ex. tx it's hard to comment on this....I did 88 weeks...(and the riba takes months afterwards, and the blood take time to recover...so for all practical purposes I was sick and on chemo for 2 years.) so I will comment.
It was an ordeal and a half and has left me with permanent issues, some major such as full time body wide tremors.....oh joy!!
If I was stage 1, as you are, I would definitely wait for the PI, or at least see if you could get the new IL28b testing to see what your genetics are like...reason being, how you respond depends greatly upon those genetics, and also, the chatter is that the real window is 72 hrs, not 4 or 12 weeks....that the virus produces wild strains in a short time so that unless you get a real strong drop and go UND quickly the odds are slimmer than previously
thought. It's not the news one wants to hear, certainly, but had I not been in late stage, and knowing what I now know, I'd want to up those odds with the better things coming.
Also, don't take my word, google 72 hour mutation hcv and read what comes up
.
Also, there's no reason to believe that 57% number for extended treaters is accurate. They are saying the overall rate of success is higher than the average rate of success in those whose virus has resisted the treatment. I find this number suspect therefore and wonder how they arrived at it. They are basically saying ex. tx has 10% better odds...those weren't the numbers 2 years ago so I'm puzzled as to how they got that bump with no changes in SOC.
Also, I'm certain that the new treatment will include in a few years things like Inovio's non-toxic vaccine, or pills that help wipe out the virus in a day, (several being developed) meaning treatment times will be greatly reduced.
If you take that into consideration, you could be finishing treatment about the time something comes out that would have cut your time treating from 18 months to just 6.
For my money, I'd think long and hard before beating a dead horse that hard, should you not reach your goal.
I'd really think of it more as an opportunity to return to health, and wait to fight on a better day. Maybe think akin to "shall I fight in the muddy rain, or wait for the sun to dry up this battlefield so I can get and keep a foothold and really kick B. on this thing.
Since your liver has little to know damage you have lots of time and that is a luxury and gives you optimum options and the ability to really stragegize well and win the day.
My best to you.
mb
My guess is that if you are not UND at 12 weeks, rather than extend you to 72 weeks of treatment, with the PI's on the horizon, the GI would rather pull you from treatment instead. However - that is your decision as much as his. Frankly, if that's his thinking, I'd agree with him considering that you're minor liver damage and just keep an eye on your progression over the next while. If you're minor liver damage, you have some time on your side to wait out the PI's even if you'd like to get this all wrapped up and done with now. Here's hoping you're UND at 12 weeks however.
Trish
Trish
I will these numbers, much appreciated. I will also try to calm down. If there wasn't an alternative in the future I would go for it. However there is no guarantee that these new meds will be released to public. Stuff happens. I'm a worrier. Need to stay positive. Thanks again.
Your doctor is wrong in stating that patients "have less than a 5% chance of SVR" if they achieve a 2 log drop at 12 weeks but are still detectable.
Though there are many variables (dosage amount, degree of liver damage, BMI, adherance to dosage regimen etc.), the figures that I have are:
(and please don't everybody jump on me; these are the percentages I have collected)
UND at 4 weeks = 90% chance of SVR
UND at 12 weeks = 68% chance of SVR
UND b4 24 weeks = 45% chance of SVR (48 weeks of treatment)
UND b4 24 weeks = 57% chance of SVR (72 weeks of treatment)
I jotted them down last year when someone here was good enough to post a link to a video by a prominent hepatologist at a conference in San Diego. Perhaps someone else can remember the link?
Anyhow, see what your 12 weeks results say. My guess is you'll be UND anyway. If not, take it from there. As others have stated, you are a GT-1 who should respond much more favorably to the new PI's that are forthcoming in 2011-12.
Good luck!
Though there are many variables (dosage amount, degree of liver damage, BMI, adherance to dosage regimen etc.), the figures that I have are:
(and please don't everybody jump on me; these are the percentages I have collected)
UND at 4 weeks = 90% chance of SVR
UND at 12 weeks = 68% chance of SVR
UND b4 24 weeks = 45% chance of SVR (48 weeks of treatment)
UND b4 24 weeks = 57% chance of SVR (72 weeks of treatment)
I jotted them down last year when someone here was good enough to post a link to a video by a prominent hepatologist at a conference in San Diego. Perhaps someone else can remember the link?
Anyhow, see what your 12 weeks results say. My guess is you'll be UND anyway. If not, take it from there. As others have stated, you are a GT-1 who should respond much more favorably to the new PI's that are forthcoming in 2011-12.
Good luck!
Personally I would take the doc's advice and stop treatment if not undetected by week 12. Then wait for the PI's. Not only would you have to treat longer, but your chances of success would go way down if you're still detected by week 12. The odds speak for stopping.
looks to me like you had a 1.08 log drop first 4 wks and another 1.47 log drop
from wk4 to wk8. which means the viral decline speeded up. hopefully it keeps doing
that the next 4 wks+. either way you will have at least a 3 log drop by wk12 and
maybe und or close to it.
from wk4 to wk8. which means the viral decline speeded up. hopefully it keeps doing
that the next 4 wks+. either way you will have at least a 3 log drop by wk12 and
maybe und or close to it.
A 2 log drop by week 12 (in the absence of UND) is to calculate the decision to extend tx to 72 weeks, an option for those who want to take their chances or who don't have the luxury of waiting to see how the stat-c's play out off-trial. "
I treated for 72 weeks however I had stage 3 liver damage. With minimal damage I and the chance the PIs are coming out shortly, I would not do this - I would wait and retreat if I had that luxury.
There is every chance that you will be UND at your 12 week test - you just have to wait and see and then decide which you would rather do depending on what the VL is. If it were ten for example that would complicate the decision greatly.
I treated for 72 weeks however I had stage 3 liver damage. With minimal damage I and the chance the PIs are coming out shortly, I would not do this - I would wait and retreat if I had that luxury.
There is every chance that you will be UND at your 12 week test - you just have to wait and see and then decide which you would rather do depending on what the VL is. If it were ten for example that would complicate the decision greatly.
Now hold on a minute pcds...
You need to know how rare it is that a doctor will stop treatment at 12 weeks if you are not clear. The benchmark to continue is the old 2-log drop. Your doctor seems to be pretty knowlegable and I think what you need is a good sit-down with him. No one wants to do this treatment more than once. So, if you can do it once, even with extended time, and clear, that is better than twice. Perhaps he just needs a committement from you to extend or up the meds.
He may be concerned because your VL was pretty high at week 4. When I was treating and reading every thread on this forum daily, I was really disappointed not to clear at week 4 . My doctor was delighted with my 2800 VL (he was an SOC kind of guy). By the way, I had to convince him to give me a 4-week VL (SOC says first one is at 12).
So coupled with the fact that you have been given PCRs at 4 weeks and 8 weeks AND that he is not happy with any VL at 12 weeks AND that he orders sensitive PCRs (Heptimax) that tells me that he is ahead of the curve. That is, he must study or research, or just plain care more than other GI's. So, my advice would be to talk with him. I think you may be underdosed with the riba if your VL has not dropped below 11 yet. Perhaps he needs to know that you will commit to more meds or more time.
frijole
You need to know how rare it is that a doctor will stop treatment at 12 weeks if you are not clear. The benchmark to continue is the old 2-log drop. Your doctor seems to be pretty knowlegable and I think what you need is a good sit-down with him. No one wants to do this treatment more than once. So, if you can do it once, even with extended time, and clear, that is better than twice. Perhaps he just needs a committement from you to extend or up the meds.
He may be concerned because your VL was pretty high at week 4. When I was treating and reading every thread on this forum daily, I was really disappointed not to clear at week 4 . My doctor was delighted with my 2800 VL (he was an SOC kind of guy). By the way, I had to convince him to give me a 4-week VL (SOC says first one is at 12).
So coupled with the fact that you have been given PCRs at 4 weeks and 8 weeks AND that he is not happy with any VL at 12 weeks AND that he orders sensitive PCRs (Heptimax) that tells me that he is ahead of the curve. That is, he must study or research, or just plain care more than other GI's. So, my advice would be to talk with him. I think you may be underdosed with the riba if your VL has not dropped below 11 yet. Perhaps he needs to know that you will commit to more meds or more time.
frijole
That's a great thought, but a drop of 2 logs or more does not predict undect at 12 wks. I have asked so many people if it is a predictor, I hear it isn't. I just have to wait and see, and hope. I really, really hope you are right jusjames.
pcds, the two log drop is for SLOW responders.
A 2 log drop by week 12 (in the absence of UND) is to calculate the decision to extend tx to 72 weeks, an option for those who want to take their chances or who don't have the luxury of waiting to see how the stat-c's play out off-trial.
Best regards and my bet is you're UND at week twelve. Keep your spirits up but it's hard, hard to wait and we all know the feeling well.
xoxo
Susan
A 2 log drop by week 12 (in the absence of UND) is to calculate the decision to extend tx to 72 weeks, an option for those who want to take their chances or who don't have the luxury of waiting to see how the stat-c's play out off-trial.
Best regards and my bet is you're UND at week twelve. Keep your spirits up but it's hard, hard to wait and we all know the feeling well.
xoxo
Susan
A 2 log drop at 12 weeks can still mean there is virus present. I think the 2 log thing is for non responders. My understanding undect is what I need to have at the end of 12 weeks. Per MD, studies show if not undec at 12 weeks there is a 5% chance to achieve SVR. My guess is if you clear after week 12, you are more likely to relapse.
I've dropped 2+ logs to 4800 at week 8. If I had 4800, a 2 log drop at week 12, it would not be good news. So the 2log thing seems worthless as it doesn't predict clearing at week 12.
I plan to take my week 12 viral load on the morning of week 13 start.
I've dropped 2+ logs to 4800 at week 8. If I had 4800, a 2 log drop at week 12, it would not be good news. So the 2log thing seems worthless as it doesn't predict clearing at week 12.
I plan to take my week 12 viral load on the morning of week 13 start.
Hi Specta,
Interesting question and I'm only guessing.
I'd say it's to bring uniformity to the decision-making process of whether to continue treatment, i.e., if you're UND or have a two log drop at week twelve. So it's important to establish a consistent point in time for everyone.
What if instead you took the test the day of your week twelve injection and weren't clear but were about to clear in a day or two or have a two log drop? Well, then you'd be dropped from tx, right?
Conversely, if you sneak in an extra injection (the 13th), then you're not clearing with twelve injections. I suppose that it doesn't mean that the science is that precise but simply that there's a clear convention is in place.
And it goes without saying you continue your meds until an official decision is made with your doc!!! :)
Susan
Interesting question and I'm only guessing.
I'd say it's to bring uniformity to the decision-making process of whether to continue treatment, i.e., if you're UND or have a two log drop at week twelve. So it's important to establish a consistent point in time for everyone.
What if instead you took the test the day of your week twelve injection and weren't clear but were about to clear in a day or two or have a two log drop? Well, then you'd be dropped from tx, right?
Conversely, if you sneak in an extra injection (the 13th), then you're not clearing with twelve injections. I suppose that it doesn't mean that the science is that precise but simply that there's a clear convention is in place.
And it goes without saying you continue your meds until an official decision is made with your doc!!! :)
Susan
Bill- There are no grey areas, only black and white!
(I think it's interesting that grey can be spelled gray also, it's a grey/gray area in itself!)
sorry, i'll shut up now. LOL
(I think it's interesting that grey can be spelled gray also, it's a grey/gray area in itself!)
sorry, i'll shut up now. LOL
Dave, I think Portann’s point was to take the test as close to 12-week mark as possible in order to maximize chances of clearing.
Bill
Bill
Why does it matter if its before or after injection. Wouldn't the person treat until pcr results
Actually, Bill is the 'sense' guy but thanks. :)
Just to clarify, the 12 week PCR is done on the day of the 13th shot BEFORE the shot. Agreed?
Susan
Just to clarify, the 12 week PCR is done on the day of the 13th shot BEFORE the shot. Agreed?
Susan
You make a lot of sense. I work in a hospital and get my labwork there and the results before the doctor. Thanks again for the info on getting my 12 week VL on the day of my shot, before the shot.
You should still discuss your options if this occurs; but it does change odds of success, no doubt. I completely understand wanting to only have to do this once; you have plenty of company there, and I imagine the doctor will be understanding too. He/she is there to help you maximize your odds and to help weigh risk vs. benefit; if this ratio isn’t there for you, he should advise you of that.
When do you submit labs; I’ll cross fingers and toes for you that day?
Bill
When do you submit labs; I’ll cross fingers and toes for you that day?
Bill
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If UND, you may still want to get a second opinion from a hepatologist, in case you want to switch to someone more experienced.
With minor liver damage and in today's climate of rapid development with stat-c drugs, I wouldn't hesitate to stop treatment if detected at week twelve; I'd watch and wait under the care of the best hepatologist I could find.
So best wishes on your PCR - the waiting is hard but be sure to tell your nurse to phone you asap and not let the lab report kick around on her desk.
And make sure to get your 12 week PCR done on the day of your thirteenth shot but before you actually do the shot. Or as close to the day as possible.
Regards,
Susan