Aa
vl load is up a little. week 6: vl 246, week 8: vl 274, boceprevir
I just got the results of my 8 weeks blood draw the last 4 weeks included the boceprevir and my viral load went from week 6 (246) to week 8 (274).
I asked the trial coordinator if I am unlikely to clear at this because of mutations and resistance and she told me that they would normally see a large spike much higher then I had if that was the case. My personal opinion although I am hopeful is that it doesn't look good. Who knows
Since there will be no newer drugs the boce and tela any time soon for me to treat with, I wonder if I should continue to treat with soc for a while at increased dose of riba and interferon if this tx doesn't work by week 12. and the vl does not start shooting up. Perhaps it is early to think about this, but at week 12 I must be und or the trial is through.
I would love some input.
Thank you!
I started the trial with a four week lead in of soc, geno 1a f 2.5, grade 3
Day 1 VL: 2,650,000
Week 2 VL 236,000
Week 4 VL 69,800
week 6 (after 2 weeks of starting boceprevir)
VL 246
week 8 VL 274
I asked the trial coordinator if I am unlikely to clear at this because of mutations and resistance and she told me that they would normally see a large spike much higher then I had if that was the case. My personal opinion although I am hopeful is that it doesn't look good. Who knows
Since there will be no newer drugs the boce and tela any time soon for me to treat with, I wonder if I should continue to treat with soc for a while at increased dose of riba and interferon if this tx doesn't work by week 12. and the vl does not start shooting up. Perhaps it is early to think about this, but at week 12 I must be und or the trial is through.
I would love some input.
Thank you!
I started the trial with a four week lead in of soc, geno 1a f 2.5, grade 3
Day 1 VL: 2,650,000
Week 2 VL 236,000
Week 4 VL 69,800
week 6 (after 2 weeks of starting boceprevir)
VL 246
week 8 VL 274
Hi Dave
I just read your post regarding your week 8 results. I agree with so many that this elevation in viral load is so minimal that i would consider it the sensativity of the test and nothing more. You are following a somewhat similiar course as me on the BOC trial. I just had a sit down with the trial doc (well renowed hepatologist). One thing he said that may be helpful to you is they are not concerned with a decrease dose of interferon affecting results as they are with decreased ribavarin (and even with decreased ribavarin they are very hopeful when combined with BOC). I know the wait is hard from week to week, but hopefully your week 10 and or week 12 results will positively explain that the little blip was nothing.
You have so much support here as you have given that support to all of us. I know by your positive attitude that this is going to work in the end for you!!!!!
Please keep me updated. Do like you do and keep on keeping on!!!
I just read your post regarding your week 8 results. I agree with so many that this elevation in viral load is so minimal that i would consider it the sensativity of the test and nothing more. You are following a somewhat similiar course as me on the BOC trial. I just had a sit down with the trial doc (well renowed hepatologist). One thing he said that may be helpful to you is they are not concerned with a decrease dose of interferon affecting results as they are with decreased ribavarin (and even with decreased ribavarin they are very hopeful when combined with BOC). I know the wait is hard from week to week, but hopefully your week 10 and or week 12 results will positively explain that the little blip was nothing.
You have so much support here as you have given that support to all of us. I know by your positive attitude that this is going to work in the end for you!!!!!
Please keep me updated. Do like you do and keep on keeping on!!!
I probably did not emphasize enough in my last post that ifn-sensitivity is the key issue for your tx. Having your ifn reduced by the trial confuses everything. By continuing on SOC and full dose ifn you will find out how responsive to ifn you are. If it turns out that you are a non-responder or partial responder, this will be invaluable information that you can use to inform your next tx.
Hope for the best, plan for the worst,
dointime
Hope for the best, plan for the worst,
dointime
"Does anyone think if I don't go und by 4 more weeks and they remove me from the trial, that I should continue treating more aggressively with soc? Perhaps changing from pegintron to pegasys at full dose for 72-96 weeks."
Hi Spectda,
It does look like you have mutations which are insensitive to the boce. Your best chance of mopping these up is to get back on full strength ifn and riba using rescue drugs and maybe add alinia too. If you are ifn-sensitive then you still have a good chance of success. When you start this, reset your count to week1 and make your plan as for 48 weeks of SOC, ie. take your benchmark RVR and EVR from the new week1 and go accordingly.
I was in a similar position on a telaprevir trial and was not clear at 12 weeks so I know what it feels like. I switched to SOC as I have described above, except without alinia. As it happens, it did not work for me but I'm glad I did it as I would always have wondered if I should have tried harder at the time. Now I know I really did my utmost and that makes it easier to accept the waiting for better drugs.
I don't think that you need to plan for more than 48 weeks at the outset. You can make that decision at the new week 12. As for changing from pegintron to pegasys I've not seen evidence to say that that would make a difference but perhaps others may have input on that particular question.
Well, I really hope you don't come to need any of this advice but I think that you are doing the right thing by planning ahead just in case.
Best of luck,
dointime
Hi Spectda,
It does look like you have mutations which are insensitive to the boce. Your best chance of mopping these up is to get back on full strength ifn and riba using rescue drugs and maybe add alinia too. If you are ifn-sensitive then you still have a good chance of success. When you start this, reset your count to week1 and make your plan as for 48 weeks of SOC, ie. take your benchmark RVR and EVR from the new week1 and go accordingly.
I was in a similar position on a telaprevir trial and was not clear at 12 weeks so I know what it feels like. I switched to SOC as I have described above, except without alinia. As it happens, it did not work for me but I'm glad I did it as I would always have wondered if I should have tried harder at the time. Now I know I really did my utmost and that makes it easier to accept the waiting for better drugs.
I don't think that you need to plan for more than 48 weeks at the outset. You can make that decision at the new week 12. As for changing from pegintron to pegasys I've not seen evidence to say that that would make a difference but perhaps others may have input on that particular question.
Well, I really hope you don't come to need any of this advice but I think that you are doing the right thing by planning ahead just in case.
Best of luck,
dointime
Hi goofy-
I am realistic, I know the reality at this point but it's not over till it's over. Ill know soon enough huh?
I am realistic, I know the reality at this point but it's not over till it's over. Ill know soon enough huh?
I don't want to be a wet blanket, but in the interest of calling a spade a spade, I think viral decline slopes are fairly consistent and I don't think there's generally a bunch of up and down churn going on between weeks divisible by four. That said, there's quite likely some intra-week variance (VL gets kocked down after shot day), which is why it's good to measure VL on the same weekday. That said, as others point out, just because a decline has leveled off doesn't mean it won't get back in the down elevator.
When you're on Neup, WBCs swing wildly. The day after a Nuep injection there's a WBC party going on, and right after the INF they're slogging it on the ropes. So if I wanted to boost my WBC reading a tad, I'd think about when I took the shots and when I give the blood.
When you're on Neup, WBCs swing wildly. The day after a Nuep injection there's a WBC party going on, and right after the INF they're slogging it on the ropes. So if I wanted to boost my WBC reading a tad, I'd think about when I took the shots and when I give the blood.
Hi Trish-
I think you offer very good advice and I agree with it completely. It can't hurt to cut back on the long walks to see if it helps. I get a burst of energy from it and then I am depleted for the rest of the day.
The backup plan is in place, the team is good and I am sticking with it, I have no inclination to stop being part of this trial. The best situation of course will be to continue with the boce throughout the study.
The study team is doing everything they can to make this work for me, I have no complaints and have faith in them. That's why I will continue to treat with them either way.
Take care,
Dave
I think you offer very good advice and I agree with it completely. It can't hurt to cut back on the long walks to see if it helps. I get a burst of energy from it and then I am depleted for the rest of the day.
The backup plan is in place, the team is good and I am sticking with it, I have no inclination to stop being part of this trial. The best situation of course will be to continue with the boce throughout the study.
The study team is doing everything they can to make this work for me, I have no complaints and have faith in them. That's why I will continue to treat with them either way.
Take care,
Dave
It does seem that maybe those last virions want to hang on. Many good points made and two in particular are that most don't test in the weeks between 4 and 12 so hard to say what kind of undulations the viral load went through for those last remaining ones. I was dropping pretty steady up to Week 3 and Week 4 dropped only 617 to miss out on RVR as I'd mentioned to you previously. It's such a small increase that I wouldn't sweat it at all and keep hanging in there until Week 10's results are back. While you do have to put one foot in front of the other you also have to think ahead and be ready for what you'll do at Week 12 when it gets there so that you're ready to change gears with meds and strategy. It's a difficult balancing act sometimes to plan for an eventuality that may not happen but it does require at least some forethought. I got caught off-guard that way when I headed into extended weeks of Peg reduction and I didn't have a Plan B - as in a doc lined up to take over treatment if things didn't go well on the trial. You're ahead of the game there and that's good.
I wouldn't increase your Peg right now as you're on the trial. It's kind of a toss-up because I know I did one week during the 7 weeks or so of Peg reduction I had and then just stuck it out.
I'm going to suggest something radical and something I have no scientific basis for ... and that is that you cut back on your walking for the next while. I know it makes you feel good and makes you feel like you're staying on top of this thing ... I ran 10K my first weekend of treatment ... felt I was kicking a$$. Then it was suggested to me that I might be expending resources my body needed to fight the virus. While I don't recommend stopping completely, I'd cut back as I think you're doing quite a fair distance a day, yes? At least for the next while until you get to Week 12, cut back on the walking is my suggestion. If you don't clear by Week 12 and you don't cut back on the walking, don't blame it on that. I'm only tossing it out there as a consideration and you can do what makes sense to you with that.
I also wouldn't worry about the resistance thing. There are new drugs in the pipeline that have shown they have different resistance profiles than the boceprevir and the telaprevir and they seem to be doing quite well so far so don't be overly concerned on that score. That's why Vertex continues to develop additional drugs, to balance off the resistance profile of Telaprevir.
As for increasing your Peg on your own....you're on a trial and general rule of thumb is you don't go cowboy on a trial. You either stick with the protocol or get off the trial so you don't skew the results. Having said that....there was one week out of the 7 or so they had me on Peg reduction that I disregarded their instructions and did full dose but never did that again. Your questions on when they can reduce are part of the trial mandate and also some at the discretion of your treating doctor. You might want to find out which that 1.0 threshold is - it it's because your doctor feels better about that and it's not a specific trial mandate, then I might push him harder to let you go back to full dose until you get past Week 12 at least and then take it a step at a time.
If you're not UND at Week 12, I'd go for it too. You're in the right mindset, you've got a good treatment team and you're this close to it, I'd go for it and take it as far as you can a step at a time.
The hard part about being on a trial is when these kinds of scenarios come up.
Good luck with this, Dave. Hanging in there with you for that Week 10 result.
Trish
I wouldn't increase your Peg right now as you're on the trial. It's kind of a toss-up because I know I did one week during the 7 weeks or so of Peg reduction I had and then just stuck it out.
I'm going to suggest something radical and something I have no scientific basis for ... and that is that you cut back on your walking for the next while. I know it makes you feel good and makes you feel like you're staying on top of this thing ... I ran 10K my first weekend of treatment ... felt I was kicking a$$. Then it was suggested to me that I might be expending resources my body needed to fight the virus. While I don't recommend stopping completely, I'd cut back as I think you're doing quite a fair distance a day, yes? At least for the next while until you get to Week 12, cut back on the walking is my suggestion. If you don't clear by Week 12 and you don't cut back on the walking, don't blame it on that. I'm only tossing it out there as a consideration and you can do what makes sense to you with that.
I also wouldn't worry about the resistance thing. There are new drugs in the pipeline that have shown they have different resistance profiles than the boceprevir and the telaprevir and they seem to be doing quite well so far so don't be overly concerned on that score. That's why Vertex continues to develop additional drugs, to balance off the resistance profile of Telaprevir.
As for increasing your Peg on your own....you're on a trial and general rule of thumb is you don't go cowboy on a trial. You either stick with the protocol or get off the trial so you don't skew the results. Having said that....there was one week out of the 7 or so they had me on Peg reduction that I disregarded their instructions and did full dose but never did that again. Your questions on when they can reduce are part of the trial mandate and also some at the discretion of your treating doctor. You might want to find out which that 1.0 threshold is - it it's because your doctor feels better about that and it's not a specific trial mandate, then I might push him harder to let you go back to full dose until you get past Week 12 at least and then take it a step at a time.
If you're not UND at Week 12, I'd go for it too. You're in the right mindset, you've got a good treatment team and you're this close to it, I'd go for it and take it as far as you can a step at a time.
The hard part about being on a trial is when these kinds of scenarios come up.
Good luck with this, Dave. Hanging in there with you for that Week 10 result.
Trish
You handle stress with such grace that you are sure to also challenge Bill in the most beloved poster category!
I really appreciate all of you very much. I didn't even know any of you a few months ago and although I haven't personally met you, but I feel that I have gotten to know many of you well. You have made this experience easier for so many of us, and I personally have gained enormous perspective from your advise, experience compassion and wisdom. And often we even have fun and some laughs while dealing with this mess and turning our bodies into glow in the dark toxic dumps! LOL
I spoke to my trial doc today. He said he would be concerned if it had moved up in the thousands, but at this point he believes I still have a decent chance. I trust his experience and understand that in any trial there are constraints and that the doctor only has so much leeway. I am not complaining, regardless of what happens, I have been lucky to have had a chance to try one of the most cutting edge drugs for our disease before it even reached the market.
If I am not und and get the boot, the doc thinks I should continue with treatment. He would be aggressive , use rescue drugs, and he has experience pushing the envelope with tx. If it goes that direction he thinks I should switch to infergen. I've read the horror stories on the board about the side effects though and would really like to switch to pegasys first.
at this point, I'm staying positive, and hoping that I will make it by week 12. Stranger things have happened! and yes there are other drugs that have little or no resistance issues that will be along.
This is truly challenging and I've only been at it a short time. It really makes me respect what many of you have been through with repeated or very long tx and often no response or relapse.
I am exhausted after a measly 10 weeks. It's going to be tough to beat Bill's record and go 96 weeks and one day, but someone has got to do it! records were made to be broken. I am coming for you Bill1954. Bill the Lance Armstrong of TX, a gentleman and a warrior!
Dave
I spoke to my trial doc today. He said he would be concerned if it had moved up in the thousands, but at this point he believes I still have a decent chance. I trust his experience and understand that in any trial there are constraints and that the doctor only has so much leeway. I am not complaining, regardless of what happens, I have been lucky to have had a chance to try one of the most cutting edge drugs for our disease before it even reached the market.
If I am not und and get the boot, the doc thinks I should continue with treatment. He would be aggressive , use rescue drugs, and he has experience pushing the envelope with tx. If it goes that direction he thinks I should switch to infergen. I've read the horror stories on the board about the side effects though and would really like to switch to pegasys first.
at this point, I'm staying positive, and hoping that I will make it by week 12. Stranger things have happened! and yes there are other drugs that have little or no resistance issues that will be along.
This is truly challenging and I've only been at it a short time. It really makes me respect what many of you have been through with repeated or very long tx and often no response or relapse.
I am exhausted after a measly 10 weeks. It's going to be tough to beat Bill's record and go 96 weeks and one day, but someone has got to do it! records were made to be broken. I am coming for you Bill1954. Bill the Lance Armstrong of TX, a gentleman and a warrior!
Dave
Sorry to hear this. You have a great attitude -- I hope you will be UND in a few weeks!
But one thing I thought to mention: there are always the polymerase inhibitors. They have been working great for many folks and having done a protease inhibitor does not mess them up for you. So there is a backup.
But one thing I thought to mention: there are always the polymerase inhibitors. They have been working great for many folks and having done a protease inhibitor does not mess them up for you. So there is a backup.
"Does anyone think if I don't go und by 4 more weeks and they remove me from the trial, that I should continue treating more aggressively with soc? Perhaps changing from pegintron to pegasys at full dose for 72-96 weeks."
Yes, I am on board with others who will encourage you to continue and up the dose as you can and extend. I would think stay in the program as long as they are giving you the BOC. I am glad willing posted because he reached a plateau too. nygirl too. She did the extra time and cleared. I think there is hope. I like what willing posted and am encouraged by these new drugs.
frijole
Yes, I am on board with others who will encourage you to continue and up the dose as you can and extend. I would think stay in the program as long as they are giving you the BOC. I am glad willing posted because he reached a plateau too. nygirl too. She did the extra time and cleared. I think there is hope. I like what willing posted and am encouraged by these new drugs.
frijole
Hang in there Dave,
You have still got plenty of time and your vl is very low. Just a small step to the side, still on track though. Neupogen is doing it's job so you can get back to full dose of peg. I have lots of faith in those magic blue pills.
positive thoughts are with you,
Debi
You have still got plenty of time and your vl is very low. Just a small step to the side, still on track though. Neupogen is doing it's job so you can get back to full dose of peg. I have lots of faith in those magic blue pills.
positive thoughts are with you,
Debi
PS I'm on board with Trin I'd bump that peg up a bit if I could......your .75 is not bad and if it drops they can neup you up again but it just might help.
Sorry I hate when I forget to say something and have to post again. Still wish we could hit edit so much!
Sorry I hate when I forget to say something and have to post again. Still wish we could hit edit so much!
There is no telling what other people's viral loads did between week 4 and week 12, since we didn't have them checked. "
With this situation it's kind irrelevant that its 4 and 8 or 4 and 8 and 9 (like pulling a Bali)..some of us just reach this plateau and can't get out of it.
Unfortunately Dave (and I'm going to really pray against this) you seem to be in the same boat I was. Week 4 was 411 and week 12 419......I got stuck and couldn't get up. But as you know I finally did SVR. It just took me a while longer.
You do have four weeks left so don't give up quite yet. All of a sudden somehow, somewhere the last remaining pain in the neck 400s I had just vanished (my doc would not test me between 12 and 24 for some stupid reason and I was too naive to insist). Kaput adios syonara little dirtbags! I didn't increase anything or add anything (I couldn't I was past max dosages by far already) but they gave up the ghost and went into the big hep garbage can in the sky somehow anyway.
If it happened to me it can happen to you. We're tough. Don't forget that - we can fight dirty too (even though if I don't know how I did it, if I could you certainly can!)
deb
With this situation it's kind irrelevant that its 4 and 8 or 4 and 8 and 9 (like pulling a Bali)..some of us just reach this plateau and can't get out of it.
Unfortunately Dave (and I'm going to really pray against this) you seem to be in the same boat I was. Week 4 was 411 and week 12 419......I got stuck and couldn't get up. But as you know I finally did SVR. It just took me a while longer.
You do have four weeks left so don't give up quite yet. All of a sudden somehow, somewhere the last remaining pain in the neck 400s I had just vanished (my doc would not test me between 12 and 24 for some stupid reason and I was too naive to insist). Kaput adios syonara little dirtbags! I didn't increase anything or add anything (I couldn't I was past max dosages by far already) but they gave up the ghost and went into the big hep garbage can in the sky somehow anyway.
If it happened to me it can happen to you. We're tough. Don't forget that - we can fight dirty too (even though if I don't know how I did it, if I could you certainly can!)
deb
Thanks everyone for you kindness and encouragement.
Your points are well taken. It's true we don't know what's going on during those normal 4 - 8 week periods when we are not tested. i am certainly not giving up yet.
My peg was reduced because my ANC went to .28, the trial does not allow you to go below .75 without dose reduction. As low as I was, in this trial setting they would normally have given me neupogen and stopped interferon altogether, but they were willing to reduce. After my first two neupogen injections my ANC is at a safe .71, but they want 1.0 now to go back to full dose
I don't how they make the decisions about where to draw the line for dose reduction and rescue drugs. Maybe they are FDA guidelines or agreements with the pharmaceutical companies when the trial is approved.
Most trials will allow rescue drugs, but I don't know how they determine dose reduction guidelines. I guess worse then having a patient not succeed with their new drugs is having something serious happen. In a private setting the doctor doesn't have the same constraints and a good one will probably push the envelope more.
Your points are well taken. It's true we don't know what's going on during those normal 4 - 8 week periods when we are not tested. i am certainly not giving up yet.
My peg was reduced because my ANC went to .28, the trial does not allow you to go below .75 without dose reduction. As low as I was, in this trial setting they would normally have given me neupogen and stopped interferon altogether, but they were willing to reduce. After my first two neupogen injections my ANC is at a safe .71, but they want 1.0 now to go back to full dose
I don't how they make the decisions about where to draw the line for dose reduction and rescue drugs. Maybe they are FDA guidelines or agreements with the pharmaceutical companies when the trial is approved.
Most trials will allow rescue drugs, but I don't know how they determine dose reduction guidelines. I guess worse then having a patient not succeed with their new drugs is having something serious happen. In a private setting the doctor doesn't have the same constraints and a good one will probably push the envelope more.
jusjames made a good point. There is no telling what other people's viral loads did between week 4 and week 12, since we didn't have them checked.
That is a very small blip in the numbers. Remember they are only taking a little bit of blood, and I'd be willing to bet the virons aren't evenly dispersed through your blood stream, so they could have done another sample and gotten a different number.
Hang in there. You have some stubborn ones left, but they are in an uphill battle against your meds, and they can't hang on for ever. I hate that you have to wait so long for your results... that would be a drag.
You have been such a help to many on here Dave, you're in my prayers.
Diane
That is a very small blip in the numbers. Remember they are only taking a little bit of blood, and I'd be willing to bet the virons aren't evenly dispersed through your blood stream, so they could have done another sample and gotten a different number.
Hang in there. You have some stubborn ones left, but they are in an uphill battle against your meds, and they can't hang on for ever. I hate that you have to wait so long for your results... that would be a drag.
You have been such a help to many on here Dave, you're in my prayers.
Diane
Hey Dave,
I am sorry to hear your news but I do believe it will get better. You still have 4 weeks to go and the "blue bombers" will do their thing. Hang in there, stay positive and and try not to worry. I am rooting for you as is everyone else!
Gee
I am sorry to hear your news but I do believe it will get better. You still have 4 weeks to go and the "blue bombers" will do their thing. Hang in there, stay positive and and try not to worry. I am rooting for you as is everyone else!
Gee
dave hang in there buddy.
when i get a test result i don`t like i run another test immeadiately to make sure.
why was peg reduced so early is it part of the study ?
i have never been in a trial so i don`t really know how that all works
but i would try everything i can to get more inf
everything crossed for wk12
when i get a test result i don`t like i run another test immeadiately to make sure.
why was peg reduced so early is it part of the study ?
i have never been in a trial so i don`t really know how that all works
but i would try everything i can to get more inf
everything crossed for wk12
listen man this is a blip, most people dont get all these pcr's just one at wk 4 and wk12, so we dont know what happens inbetween, these blips happen more than we think, you will be clear at wk 12 just carry on and dont change anything ...dont jump the gun ..
I think you've got a long ways to go yet. You're still in good shape. Keep workin at it. You're doin good.
Sorry for the less than stellar news. Your good attitude will carry you far against this disease. Let's see what the next few weeks bring.
You're right, we only have som much control over the outcome. I will have 10 week draw on tuesday, it took 11 days to get my results this time. Yes I agree about the 10 week, if it goes up by anything remotely substantial I believe it will be over, if it goes down, we are making a dent once again.
Thanks and I hope I can follow in your footsteps.
take care,
Dave
Thanks and I hope I can follow in your footsteps.
take care,
Dave
can-do -- Gratbird is my evil twin. Bwahaha.
spectda -- all you can do at this point is hang in there and that would be true even if you were getting strong and clear UNDs. As you can see from my history, getting rid of the stragglers can be tough but it is doable.
Are they going to give you a 10 week PCR? That will be very telling.
I remember how nerve-wracking it was at the same point in my tx. Thinking only good thoughts for you.
GB
spectda -- all you can do at this point is hang in there and that would be true even if you were getting strong and clear UNDs. As you can see from my history, getting rid of the stragglers can be tough but it is doable.
Are they going to give you a 10 week PCR? That will be very telling.
I remember how nerve-wracking it was at the same point in my tx. Thinking only good thoughts for you.
GB
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