anyone on the 24 weeks Solvaldi/ riba trials for geno3s.?
Zlikster said
Dec 14, 2014
time for clean blood mate! :) i am sure week 6 VL results will be UND...
cheers
Liamc said
Dec 13, 2014
Yes I would say 2115 is the year also the Indian pharma companies start production in June...it's all happening. I see the doctor for bloods every 2 weeks for the first 12, just had my 6 weeks done 2 days ago.
Zlikster said
Dec 13, 2014
All good man ;) dtill hunting Sofosbuvir around the world...just got some intel on Egypt. Officially you can't apply for government funded Sovaldi tx, only egyptians are allowed . It will be available for 'em in first half 2015. That leaves me with black market options. In any case 2015 seems to be the year for me (i hope) ;)
at what week you are? next PCR check @ w4?
Liamc said
Dec 13, 2014
Thanks all for your words of of advice and wisdom. How is it all going Z?
pamelajean said
Dec 12, 2014
Liamc wrote:
Hi Matt,He did not give me the paper work, but said it was Still detectable, he did try and explain something about 15 plus or minus but it was 7 am this morning and the fog had not lifted.He did mention that the longer it takes to clear it will slightly lessen my chances of SLV
thanks for your comments Matt appreciate it.
Not sure I agree with your doc....I know several folks...on S/O, S/D and Harvoni...that were not UND until 4-6 even 8 weeks that went on to SVR 24....myself included. NOTE the following are stats with S/O but am sharing in hopes that it will make you feel better about your results.
Being undetectable by week 4 with this treatment (S/O) has no correlation to SVR rates. Only 57% of patients are undetectable at week 4. But 93% attain SVR.
"Rapid virologic response (RVR, defined as undetectable HCV RNA at Week 4 of treatment) was not found to be predictive of achieving SVR. In patients receiving simeprevir and sofosbuvir alone for 12 weeks, 93 percent achieved SVR, while 57 percent achieved RVR."
Zlikster said
Dec 12, 2014
Hi Liam,
don't worry mate. Your VL is at borderline of detection. Depending of the PCR machine and it's sensitivity. Next time you are gonna be UND 100%. As for hgb level, u got a lot of space there. Below 110 or 100 hgb/L is the zone where u might opt in for Procrit or they might lower your Ribavirin dosage. I would go as far as i can without lowering Riba and opt in for Procrit if gets tough (there is always transfusion if it gets really bad), since you are only on Sofosbuvir+Riba, every bit of antiviral substances in your blood counts. Njoy in your normal AST/ALT levels :)
@Girlfriend1977, beside that your bf is GT3 and that he was UND @ w4, you haven't told us other details which might impact on his SVR chance (liver condition, fibrosis/steatosis, coinfection, treatment naive/experienced, etc). For GT3s on Riba+Sofosbuvir chance of SVR are from aprox 70-90% depending on those preconditions and tx response. I wouldn't worry much about Riba, tho it seems at first a lot of pills he missed (not sure how many per day he used, since it's weight based), but it could be just 4 days worth of pills, also i presume those pills were missed towards the end of therapy? Riba accumulates in body, so 4 days missed ain't much. In any case consult with his doc and do not let him take riba after tx on his own. Since he was UND @ w4 his chances are great, so don't worry. It will take some time to recover from Riba accumulation (3-6months), but in first 2 weeks he will see rapid recovery and his energy back (as hgb gets back to normalish levels). Do not let him on sun, without heavy UV protection for at least 3 months.
best
Girlfriend1977 said
Dec 12, 2014
Hi My Boyfriend finished his 24 wks of Solvaldi and Ribo (Genotype 3) today. Virus was undetectable at first blood test (4 wks) Does anyone know how bad it is to have missed the ribavirin over the course of the treatment. He missed a total of 22 pills through the 24 weeks. Should he continue to take them for the next 11 days without the Sovaldi? He had a major depression and anxiety issue anyway. Do you think it will get better now that he is finished treatment? What are the chances of SVR?
Thank you
Liamc said
Dec 12, 2014
Hi Matt,He did not give me the paper work, but said it was Still detectable, he did try and explain something about 15 plus or minus but it was 7 am this morning and the fog had not lifted.He did mention that the longer it takes to clear it will slightly lessen my chances of SLV
thanks for your comments Matt appreciate it.
Matt Chris said
Dec 12, 2014
Hey Liamc
Can you scan in your viral load paperwork because less than 15 in some viral essays would be considered UND. Also sometimes it can take 6 to 8 weeks to reach UND so I would not worry because you have 24 weeks. The Ribavirin has knock down your HGB which was a normal drop amount. The trial arm with the extra DAA with have a faster reduction but I would guess that Gilead wants to figure out what works the best for GT3's, that why they have different arms in trials to compare between the groups.
Hang in there things will likely get better.
matt
Liamc said
Dec 11, 2014
Just got my one month results back, My VL is still detected less than 15, my Alt is 23 ( when I started it was 390) and my hgb. Is 132 from a base line of 150 no sure if that is good or bad, the doctor gives minimal explanation,I was expecting to be undetected but my energy levels are ok. 3 of the other trial participants I know are on the 12 week Gilead 5816 and all are undetected at 4 weeks.Any thoughts on this info? feeling a bit flat after my appointment.
cheers
justvlm said
Nov 28, 2014
mallani wrote:
Hi Liam,
Congrats mate, you're on your way.
Don't worry about the VL, it will soon be Undetected and stay that way.
Post your Hb when you get it.
I'm still in NZ, so have missed the Brisbane storms. CHEERS.
Just a note to say thank you, Mallani, for checking in while you are enjoying your vacation. I hope the sun is shining on your face and the breeze to your back.
Thanks for all you do to contribute here.
-- Edited by justvlm on Friday 28th of November 2014 08:08:51 PM
Liamc said
Nov 28, 2014
There were 3 other people on the trials in the waiting room all where on the 12 week sofosbuvir/gs5816 their viral load was 15 or less, so I guess mine sounded high.
Thanks you all go your imput, I don't have any one around to bounce my concerns off so this forum really is a blessing for me.
Liamc said
Nov 28, 2014
Hi Malcolm,Thank for that, my 2 week blood count was ok, I will let you know my 4 week on my next visit. I have been expereiencing shortness of breath and general fatigue so we will see.
Enjoy NZ
cheers liam
mallani said
Nov 28, 2014
Hi Liam,
Congrats mate, you're on your way.
Don't worry about the VL, it will soon be Undetected and stay that way.
Post your Hb when you get it.
I'm still in NZ, so have missed the Brisbane storms. CHEERS.
Tig said
Nov 28, 2014
Hi Liam,
I have to echo Jill's statement. Two weeks is early in the process and a significant drop in your VL like that is an excellent sign of the drugs effectiveness in your case. Your results at this stage are fantastic and you've got every reason to be optimistic! Good luck!
Tig
Cinnamon Girl said
Nov 28, 2014
Hi Liam, a viral load drop like that is fantastic after just 2 weeks, so please try not to let it worry you. We all expect immediate results with the wonder drug Sovaldi but don`t forget it`s still early days for you in a 24 week trial and the main thing is that the tx is obviously working. Your ALT level is great too.
And bear in mind too that based on earlier clinical trial data Gilead recommends a duration of 24 weeks for genotype 3`s who are prescribed Sov/riba, rather than 12 weeks, and that`s for good reason.
You`re doing well and the drugs are doing their job so relax and keep going! Best of luck, and do keep us updated.
Liamc said
Nov 28, 2014
Hi Jill,
My 2 week tests came back my VL is at 51...the doctor expected it to be undetected, has made me feel quite anxious about it. He said will see how the one month results come back. All my other blood work are normal my ALT is at 33 it has been over 300 for so long.
cheers
liam
Cinnamon Girl said
Nov 25, 2014
I wouldn`t say it was too early to be getting those sx, Liam. The effects of the drugs kick in very quickly, and I remember when I was on my peg/rib tx that I started feeling short of breath within the first few days. We`re all different of course in the way that the drugs affect us but it sounds quite normal to me. It`s not easy having to cope with a drop in energy levels, I know, but it`ll be worth it in the end!
Let us know how you get on with your bloods on Friday...best of luck!
Liamc said
Nov 25, 2014
Hi Cinnoman girl,
Thankyou for your response, it's good to know there is some positives in the symptoms I am experiencing. I go for my one month blood tests this Friday. Is it a bit early in my trial to be getting shortness of breath and fatigue?
cheers
liam
Cinnamon Girl said
Nov 24, 2014
Hi Liam, it sounds like you`ve made excellent progress so far, and your viral load really took a nosedive after just one week!!
We`ve had many members who`ve treated with the Sovaldi/Riba combo, although I don`t think we have anyone else currently on this trial.
The symptoms you describe of fatigue and shortness of breath are almost certainly caused by the effect of the riba on your Hg levels, which is a common side effect with any treatment regimen that contains ribavirin. Ribavirin can often cause some degree of a type of anaemia called haemolytic anaemia, and if your Hg levels are falling it`s actually a good sign that the tx is working. As you`re on a trial I`m sure your blood levels will be monitored on a regular basis. When will you be going in for your next blood tests?
Do keep us updated, and good luck! Try to take it easy!
Liamc said
Nov 23, 2014
hi,
Just finished my 3 rd week on the trials, I was not going to accept the trial but have bit the bullet and am going for it. My VL went from 1,700,000 to 110 in the first week and my alt and ast are normal for the first time in 20 years. I am starting to feel tired and having shortness of breath. Just wondering if any one else out their and how are they travelling.?
time for clean blood mate! :) i am sure week 6 VL results will be UND...
cheers
Yes I would say 2115 is the year also the Indian pharma companies start production in June...it's all happening. I see the doctor for bloods every 2 weeks for the first 12, just had my 6 weeks done 2 days ago.
All good man ;) dtill hunting Sofosbuvir around the world...just got some intel on Egypt. Officially you can't apply for government funded Sovaldi tx, only egyptians are allowed . It will be available for 'em in first half 2015. That leaves me with black market options. In any case 2015 seems to be the year for me (i hope) ;)
at what week you are? next PCR check @ w4?
Thanks all for your words of of advice and wisdom. How is it all going Z?
Not sure I agree with your doc....I know several folks...on S/O, S/D and Harvoni...that were not UND until 4-6 even 8 weeks that went on to SVR 24....myself included. NOTE the following are stats with S/O but am sharing in hopes that it will make you feel better about your results.
Being undetectable by week 4 with this treatment (S/O) has no correlation to SVR rates. Only 57% of patients are undetectable at week 4. But 93% attain SVR.
http://www.jnj.com/news/all/Final-Data-from-the-Phase-2-COSMOS-Study-of-Janssens-Once-Daily-Simeprevir-in-Combination-with-Sofosbuvir-Presented-at-The-International-Liver-Congress-2014-of-the-European-Association-for-the-Study-of-the-Liver-EASL
"Rapid virologic response (RVR, defined as undetectable HCV RNA at Week 4 of treatment) was not found to be predictive of achieving SVR. In patients receiving simeprevir and sofosbuvir alone for 12 weeks, 93 percent achieved SVR, while 57 percent achieved RVR."
Hi Liam,
don't worry mate. Your VL is at borderline of detection. Depending of the PCR machine and it's sensitivity. Next time you are gonna be UND 100%. As for hgb level, u got a lot of space there. Below 110 or 100 hgb/L is the zone where u might opt in for Procrit or they might lower your Ribavirin dosage. I would go as far as i can without lowering Riba and opt in for Procrit if gets tough (there is always transfusion if it gets really bad), since you are only on Sofosbuvir+Riba, every bit of antiviral substances in your blood counts. Njoy in your normal AST/ALT levels :)
@Girlfriend1977, beside that your bf is GT3 and that he was UND @ w4, you haven't told us other details which might impact on his SVR chance (liver condition, fibrosis/steatosis, coinfection, treatment naive/experienced, etc). For GT3s on Riba+Sofosbuvir chance of SVR are from aprox 70-90% depending on those preconditions and tx response. I wouldn't worry much about Riba, tho it seems at first a lot of pills he missed (not sure how many per day he used, since it's weight based), but it could be just 4 days worth of pills, also i presume those pills were missed towards the end of therapy? Riba accumulates in body, so 4 days missed ain't much. In any case consult with his doc and do not let him take riba after tx on his own. Since he was UND @ w4 his chances are great, so don't worry. It will take some time to recover from Riba accumulation (3-6months), but in first 2 weeks he will see rapid recovery and his energy back (as hgb gets back to normalish levels). Do not let him on sun, without heavy UV protection for at least 3 months.
best
Hi My Boyfriend finished his 24 wks of Solvaldi and Ribo (Genotype 3) today. Virus was undetectable at first blood test (4 wks) Does anyone know how bad it is to have missed the ribavirin over the course of the treatment. He missed a total of 22 pills through the 24 weeks. Should he continue to take them for the next 11 days without the Sovaldi? He had a major depression and anxiety issue anyway. Do you think it will get better now that he is finished treatment? What are the chances of SVR?
Thank you
Hi Matt,He did not give me the paper work, but said it was Still detectable, he did try and explain something about 15 plus or minus but it was 7 am this morning and the fog had not lifted.He did mention that the longer it takes to clear it will slightly lessen my chances of SLV
thanks for your comments Matt appreciate it.
Hey Liamc
Can you scan in your viral load paperwork because less than 15 in some viral essays would be considered UND. Also sometimes it can take 6 to 8 weeks to reach UND so I would not worry because you have 24 weeks. The Ribavirin has knock down your HGB which was a normal drop amount. The trial arm with the extra DAA with have a faster reduction but I would guess that Gilead wants to figure out what works the best for GT3's, that why they have different arms in trials to compare between the groups.
Hang in there things will likely get better.
matt
Just got my one month results back, My VL is still detected less than 15, my Alt is 23 ( when I started it was 390) and my hgb. Is 132 from a base line of 150 no sure if that is good or bad, the doctor gives minimal explanation,I was expecting to be undetected but my energy levels are ok. 3 of the other trial participants I know are on the 12 week Gilead 5816 and all are undetected at 4 weeks.Any thoughts on this info? feeling a bit flat after my appointment.
cheers
Just a note to say thank you, Mallani, for checking in while you are enjoying your vacation. I hope the sun is shining on your face and the breeze to your back.
Thanks for all you do to contribute here.
-- Edited by justvlm on Friday 28th of November 2014 08:08:51 PM
There were 3 other people on the trials in the waiting room all where on the 12 week sofosbuvir/gs5816 their viral load was 15 or less, so I guess mine sounded high.
Thanks you all go your imput, I don't have any one around to bounce my concerns off so this forum really is a blessing for me.
Hi Malcolm,Thank for that, my 2 week blood count was ok, I will let you know my 4 week on my next visit. I have been expereiencing shortness of breath and general fatigue so we will see.
Enjoy NZ
cheers liam
Hi Liam,
Congrats mate, you're on your way.
Don't worry about the VL, it will soon be Undetected and stay that way.
Post your Hb when you get it.
I'm still in NZ, so have missed the Brisbane storms. CHEERS.
Hi Liam,
I have to echo Jill's statement. Two weeks is early in the process and a significant drop in your VL like that is an excellent sign of the drugs effectiveness in your case. Your results at this stage are fantastic and you've got every reason to be optimistic! Good luck!
Tig
Hi Liam, a viral load drop like that is fantastic after just 2 weeks, so please try not to let it worry you. We all expect immediate results with the wonder drug Sovaldi but don`t forget it`s still early days for you in a 24 week trial and the main thing is that the tx is obviously working. Your ALT level is great too.
And bear in mind too that based on earlier clinical trial data Gilead recommends a duration of 24 weeks for genotype 3`s who are prescribed Sov/riba, rather than 12 weeks, and that`s for good reason.
You`re doing well and the drugs are doing their job so relax and keep going! Best of luck, and do keep us updated.
Hi Jill,
My 2 week tests came back my VL is at 51...the doctor expected it to be undetected, has made me feel quite anxious about it. He said will see how the one month results come back. All my other blood work are normal my ALT is at 33 it has been over 300 for so long.
cheers
liam
I wouldn`t say it was too early to be getting those sx, Liam. The effects of the drugs kick in very quickly, and I remember when I was on my peg/rib tx that I started feeling short of breath within the first few days. We`re all different of course in the way that the drugs affect us but it sounds quite normal to me. It`s not easy having to cope with a drop in energy levels, I know, but it`ll be worth it in the end!
Let us know how you get on with your bloods on Friday...best of luck!
Hi Cinnoman girl,
Thankyou for your response, it's good to know there is some positives in the symptoms I am experiencing. I go for my one month blood tests this Friday. Is it a bit early in my trial to be getting shortness of breath and fatigue?
cheers
liam
Hi Liam, it sounds like you`ve made excellent progress so far, and your viral load really took a nosedive after just one week!!
We`ve had many members who`ve treated with the Sovaldi/Riba combo, although I don`t think we have anyone else currently on this trial.
The symptoms you describe of fatigue and shortness of breath are almost certainly caused by the effect of the riba on your Hg levels, which is a common side effect with any treatment regimen that contains ribavirin. Ribavirin can often cause some degree of a type of anaemia called haemolytic anaemia, and if your Hg levels are falling it`s actually a good sign that the tx is working. As you`re on a trial I`m sure your blood levels will be monitored on a regular basis. When will you be going in for your next blood tests?
Do keep us updated, and good luck! Try to take it easy!
hi,
Just finished my 3 rd week on the trials, I was not going to accept the trial but have bit the bullet and am going for it. My VL went from 1,700,000 to 110 in the first week and my alt and ast are normal for the first time in 20 years. I am starting to feel tired and having shortness of breath. Just wondering if any one else out their and how are they travelling.?
cheers
liam