Aa
From 14 to 8 million after 4 weeks: is there any hope?
I started with a HCV viral load of 13,700,000. After 4 weeks, it has dropped to 8,120,000. I know that it should drop below 137,000 (less than 1%) at week 12, otherwise the treatement will be stopped as a "non-responder". Now, I wonder, with so little of a drop after 4 weeks, is there any hope of success?
Are there any other people here who had a result as bad is this at 4 weeks, and how did you fare? I'm curious to know, thanks.
Are there any other people here who had a result as bad is this at 4 weeks, and how did you fare? I'm curious to know, thanks.
I was a slow responder with geno 1. I made the cut at 12 weeks with a 2 log drop in vl. I was UND at 24 or 25 weeks (long story). I opted to extend treatment to 72 weeks and then to 84 weeks due to studies showing that extended treatments for slow responders could significantly improve odds of SVR.
Being a transplant patient, my initial odds were low also. I estimate that by extending my treatment period I have improved my odds to the equivalent of those who were UND at 12 weeks, maybe 50-60%. I am 6 weeks post treatment now and was UND on last PCR at 4 weeks post TX.
I like to think there is hope for slow responders. I felt I did not have time to wait for new drugs for because of how fast the disease progressed after my transplant. Better treatments are surely on the way if you can wait.
Being a transplant patient, my initial odds were low also. I estimate that by extending my treatment period I have improved my odds to the equivalent of those who were UND at 12 weeks, maybe 50-60%. I am 6 weeks post treatment now and was UND on last PCR at 4 weeks post TX.
I like to think there is hope for slow responders. I felt I did not have time to wait for new drugs for because of how fast the disease progressed after my transplant. Better treatments are surely on the way if you can wait.
So at 4 weeks you had a 0.09 drop, and at 8 weeks a 1 log drop -- which is not great. BUT, you have geno 3 and started with a low VL. So you're chances (because that's what counts in the end, your chance of clearing the virus for good) are still worthwhile. Perhaps you should continue to 12 weeks, and see where your VL is then. Compare your chances *then* with the option of stopping and waiting 2 years for the new drugs to try again with a better chance. Stage 2 after 37 years does allow for an extra 2 year, I'd say.
Well, you asked for 8 week results. They just came in-albeit very early.
I've gone from 118,000 at baseline to 95,000 at 4 weeks to 11,700 at 8weeks.
So I think I go to 12 weeks and hope for UND. I'll talk with all the doctors tomorrow.
Any thoughts anyone?
I've gone from 118,000 at baseline to 95,000 at 4 weeks to 11,700 at 8weeks.
So I think I go to 12 weeks and hope for UND. I'll talk with all the doctors tomorrow.
Any thoughts anyone?
RCM829, thanks for your response. Yes, I'm happy that some clear criterion was set today. For the rest, it's wait and see what will be the result in two weeks time. As you wrote, I also think breakthroughs are imminent given the massive research that is being undertaken into HepC.
Let know how your results are. Good luck!
Let know how your results are. Good luck!
Being that you are a geno 1 and co-infected with HIV, that's a difficult decision. Hopefully you are seeing a hepatologist experienced with co-infection since the rate of clearance might be slower than for non co-infected patients.
However, I believe that your 7 to 8 week results will be telling, and that you will feel more confident making your decision at that juncture.
I went throuhg the exact same thing last month.
I'm a geno 3a, early stage 2, grade 2 who has had Hep C for 37 years. My 4 week results were very disappointing. I went from 118,00 to 95,000. I am a previous non responder.
My doctor wanted to go to 12 weeks. The second opinion, a renowned liver disease specialist here in L.A. said "quit now" because I have no other health issues (insulin resistance etc.) and because of my genotype. Apparently, us geno 3's either respond favorably at 4 weeks or we dont..
For better or worse, I compromised.
Although there is little clinical data to suggest it helps geno 3's achieve SVR, I increased the ribavirin anyway and arranged for an 8 week HCV Quant. that I will see the results of in a few days. If there is not a signifacant drop, I stop the treatment..
BTW, this specialist I saw emphasized that the second and third rounds of protease and polymerase inhibitors will have significant cure rates and should be available in 2 or more years. He said this is a disease that will be cured in my lifetime.
Hang in there. I understand your disappointment. There is a cure for this in the forseeable future. In the meantime, I truly hope your 8 week results are more encouraging.
However, I believe that your 7 to 8 week results will be telling, and that you will feel more confident making your decision at that juncture.
I went throuhg the exact same thing last month.
I'm a geno 3a, early stage 2, grade 2 who has had Hep C for 37 years. My 4 week results were very disappointing. I went from 118,00 to 95,000. I am a previous non responder.
My doctor wanted to go to 12 weeks. The second opinion, a renowned liver disease specialist here in L.A. said "quit now" because I have no other health issues (insulin resistance etc.) and because of my genotype. Apparently, us geno 3's either respond favorably at 4 weeks or we dont..
For better or worse, I compromised.
Although there is little clinical data to suggest it helps geno 3's achieve SVR, I increased the ribavirin anyway and arranged for an 8 week HCV Quant. that I will see the results of in a few days. If there is not a signifacant drop, I stop the treatment..
BTW, this specialist I saw emphasized that the second and third rounds of protease and polymerase inhibitors will have significant cure rates and should be available in 2 or more years. He said this is a disease that will be cured in my lifetime.
Hang in there. I understand your disappointment. There is a cure for this in the forseeable future. In the meantime, I truly hope your 8 week results are more encouraging.
Today I had my next appointment with my doc. I've used the past week to assess my situation carefully. The facts:
- I have genotype 1
- Since two years ago (when I got infected), my liver went to stage 3 fibrosis (based on one fibroscan in September 2008)
- My chance of success was only 30% at the start of treatment (due to my co-infection of HIV)
- I started treatement with a high VL of 13.8 million
- My drop in VL at week 4 turned out to be a disappointing 0.23 log
- According to the protocol, failing to reach a 2 log drop at 4 weeks translates into drop in expected success of treatment downto 10%
- Also according to protocol, continuation of treatement is to be decided by the VL test at week 12. If the drop in VL is less than 2 log from baseline, chance of success is less than 5%. Hence, treatement would be discontinued.
- At week 8 there's an additional VL test.
If the VL test at 8 weeks is again a disappointment, I don't see the use of continuing upto week 12. Especially, since there are so many promising new drugs on the horizon (like R7128, SCH 900518, VX 950, and especially BI 201335). I expect these to hit the market in 2 years time. And perhaps, being co-infected, I can participate in trials aimed at co-infected patients earlier.
On top of that, I have a vacation planned between week 8 and week 12. (This was already fixed before I knew I would start treatment, trust me, I would have planned otherwise if I had known!). Hence, I additionally proposed to do the next VL test not at 8 weeks but at 7 weeks. Then IF I stop treatement, it would allow me to stop before I leave,
Of course, she was reluctant to give in to my request. After all, she prefers to stick to the protocol, and decide at week 12. But luckily, she also saw the logic of my reasoning. Regarding my next VL test (at the proposed 7th week) I confronted my her with the question what result she would regard to be "hopeless". She said that a 2 log drop from baseline would be hopefull enough to continue, but a drop of less than 1 log would surely be hopeless.
So the deal is:
- I'm allowed to be tested one week earlier than supposed to for my next VL.
- If the drop of that test turns out less than 1 log, I quit immediately. (It remains to be seen what we'll do if it's a little over 1 -- but still far from 2 -- but I'll see then)
I'll get the result the day I leave for my trip, in two weeks exactly from now. That's promising to be an exciting day!
At least it's clear what will happen, and that I am not going to stay on treatement the full 12 weeks if my chances remain hopeless.
V.
- I have genotype 1
- Since two years ago (when I got infected), my liver went to stage 3 fibrosis (based on one fibroscan in September 2008)
- My chance of success was only 30% at the start of treatment (due to my co-infection of HIV)
- I started treatement with a high VL of 13.8 million
- My drop in VL at week 4 turned out to be a disappointing 0.23 log
- According to the protocol, failing to reach a 2 log drop at 4 weeks translates into drop in expected success of treatment downto 10%
- Also according to protocol, continuation of treatement is to be decided by the VL test at week 12. If the drop in VL is less than 2 log from baseline, chance of success is less than 5%. Hence, treatement would be discontinued.
- At week 8 there's an additional VL test.
If the VL test at 8 weeks is again a disappointment, I don't see the use of continuing upto week 12. Especially, since there are so many promising new drugs on the horizon (like R7128, SCH 900518, VX 950, and especially BI 201335). I expect these to hit the market in 2 years time. And perhaps, being co-infected, I can participate in trials aimed at co-infected patients earlier.
On top of that, I have a vacation planned between week 8 and week 12. (This was already fixed before I knew I would start treatment, trust me, I would have planned otherwise if I had known!). Hence, I additionally proposed to do the next VL test not at 8 weeks but at 7 weeks. Then IF I stop treatement, it would allow me to stop before I leave,
Of course, she was reluctant to give in to my request. After all, she prefers to stick to the protocol, and decide at week 12. But luckily, she also saw the logic of my reasoning. Regarding my next VL test (at the proposed 7th week) I confronted my her with the question what result she would regard to be "hopeless". She said that a 2 log drop from baseline would be hopefull enough to continue, but a drop of less than 1 log would surely be hopeless.
So the deal is:
- I'm allowed to be tested one week earlier than supposed to for my next VL.
- If the drop of that test turns out less than 1 log, I quit immediately. (It remains to be seen what we'll do if it's a little over 1 -- but still far from 2 -- but I'll see then)
I'll get the result the day I leave for my trip, in two weeks exactly from now. That's promising to be an exciting day!
At least it's clear what will happen, and that I am not going to stay on treatement the full 12 weeks if my chances remain hopeless.
V.
It is encouraging to hear an example that shows it is not hopeless, yet. I knew from the start my chances of clearing were dim (30%). But given the state of the infection and the good effect the interferon has on my HIV, it was worth to try.
Thanks for a hopeful example!
Thanks for a hopeful example!
I weigh 69 kg, and I use 1000 mg of ribavarin which should be the corresponding amount to a weight less than 75 kg for genotype 1. So it should be enough. I take my riba alwatys at 12:00, once with lunch, and once at midnight. I then always eat a little snack, and I do take care it contains fat (i.e. not just an apple or something like that).
Ribavirin has nothing to do with viral elimination.
It's action ( as far as is understood ) is to induce genetic sampling error to reduce the chances of a successful variant forming.
Telling people who are not responding after four weeks to take more ribavirin is downright wrong!
I have alluded to this numerous times on this forum,yet it still comes back time and time again like a bad apple.
In my humble opinion Virusbuster here is,sadly,a non-responder who will need to use inhibitor drugs to achieve viral clearance.
It's action ( as far as is understood ) is to induce genetic sampling error to reduce the chances of a successful variant forming.
Telling people who are not responding after four weeks to take more ribavirin is downright wrong!
I have alluded to this numerous times on this forum,yet it still comes back time and time again like a bad apple.
In my humble opinion Virusbuster here is,sadly,a non-responder who will need to use inhibitor drugs to achieve viral clearance.
My Hb has been dropping, from 9.2 mmol/l steadily downto 7.3 at week 4 -- it has been measured weekly. In US units I think it should be multiplied by 1.6, so that would be from 17.1 g/dl downto 11.7 .
My liver damage is stage 3. I only had a fribrosis scan though, given my high viral load and ALT/AST values that wasn't deemed nessessary.
My liver damage is stage 3. I only had a fribrosis scan though, given my high viral load and ALT/AST values that wasn't deemed nessessary.
Just want to point out I started out on 1000 mg of riba at 115lb. That's 200mg more per day than my weight calls for. Hgb never dropped 2 points from pre-tx. Ate appropriate amounts of fat with riba.
Slow responder, barely made a 1 log drop at wk 6. Still not UND at wk 12 but did UND.
Ny says she took crazy amounts of riba and was anemic and was a slow responder too.
I think it has alot to do with how your body metabolizes the meds. Going anemic isn't going to ensure a 2 log drop or that you will UND or SVR in my opinion. What it does indicate is your body reacts very well to the riba. To this day I've never had problems with severe anemia but have with the whites.
Trinity
Slow responder, barely made a 1 log drop at wk 6. Still not UND at wk 12 but did UND.
Ny says she took crazy amounts of riba and was anemic and was a slow responder too.
I think it has alot to do with how your body metabolizes the meds. Going anemic isn't going to ensure a 2 log drop or that you will UND or SVR in my opinion. What it does indicate is your body reacts very well to the riba. To this day I've never had problems with severe anemia but have with the whites.
Trinity
I had a very slow response at four weeks. My starting VL was lower than yours. I went from 930,000 to 760,000. At week twelve I cleared by two log drop and cleared at week 24. I'm now coming close to the end of 72 weeks of treatment.
I'm honestly not sure I made the right decision by continuing. My liver damage was 2/2 at the outset. I likely could have stopped treatment and waited for newer drugs. But I found that the more time I invested, the harder it was for me to give up. At six months I had no problem committing to 72 weeks. I'll conclude my treatment in a few weeks and my best guess is that I have a 50% chance of SVR.
Depending upon your level of liver damage I think you do need to seriously weigh the plusses and minuses of continuing given a slow response. I have no idea if I've inflicted long term issues on myself by undergoing 72 weeks of treatment. I do know that I've placed my family under an enormous amount of stress. And, of course, I have no idea whether my treatment will be successful. The most prudent course is not always the most aggressive.
Good luck! I know it's a hard pill to swallow to realize you're not one of the lucky early responders. But it's important to weigh all the plusses and minuses given the situation.
I'm honestly not sure I made the right decision by continuing. My liver damage was 2/2 at the outset. I likely could have stopped treatment and waited for newer drugs. But I found that the more time I invested, the harder it was for me to give up. At six months I had no problem committing to 72 weeks. I'll conclude my treatment in a few weeks and my best guess is that I have a 50% chance of SVR.
Depending upon your level of liver damage I think you do need to seriously weigh the plusses and minuses of continuing given a slow response. I have no idea if I've inflicted long term issues on myself by undergoing 72 weeks of treatment. I do know that I've placed my family under an enormous amount of stress. And, of course, I have no idea whether my treatment will be successful. The most prudent course is not always the most aggressive.
Good luck! I know it's a hard pill to swallow to realize you're not one of the lucky early responders. But it's important to weigh all the plusses and minuses given the situation.
Riba is really really crucial during the first 12 weeks - how much are you on and is it near weight based? I think that these results warrant a discussion with your doctor and question whether or not you are getting enough into your system.
Are you taking the riba with a meal with plenty of fat in it to make sure it isn't just being 'washed' out right away?
While this isn't great news it's not the end of the world you DO have time to see if you can adjust your meds and get a response that you'd like better.
We are all rooting for you VirusBuster - don't give up quite yet it's time to do some questioning of what is going on and get a bit more proactive if possible (even if your doc thinks you are nuts!)
Are you taking the riba with a meal with plenty of fat in it to make sure it isn't just being 'washed' out right away?
While this isn't great news it's not the end of the world you DO have time to see if you can adjust your meds and get a response that you'd like better.
We are all rooting for you VirusBuster - don't give up quite yet it's time to do some questioning of what is going on and get a bit more proactive if possible (even if your doc thinks you are nuts!)
You got less than a one-log drop which is not great and some might argue suggests no drop/response at all because of the variance in the test itself.
Id certainly evaluate things such as if youre on the proper amount of medications. Do you know your pre-tx hemoglobin and what it was at week 4? If it didn't drop at least a couple of points it could suggest you are being underdosed with riba regardless if youre on weight-based or not. How much liver damage do you have via biopsy?
-- Jim
Id certainly evaluate things such as if youre on the proper amount of medications. Do you know your pre-tx hemoglobin and what it was at week 4? If it didn't drop at least a couple of points it could suggest you are being underdosed with riba regardless if youre on weight-based or not. How much liver damage do you have via biopsy?
-- Jim
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