Sad to say that I had a viral load increase to 3000 at week 8 on triple therapy. Trying to wrap my head around it all, but in the meantime I have been looking at the trials available in my area. I see one that seems I would be a candidate for - Sofosbuvir/ 5885 with or without riga. I am not familiar with these trials and how they work, but I emailed the contact person and my nurse. Are these the correct steps? If anyone has any other ideas, I would appreciate it!! Thanks!!
first let me say I am sorry about your response. When looking into trials the first thing is to see who they are excluding, it looks as if you were a non-responder... This will help you decide which one's to look further into..
Thanks for the comments. Yea, it really *****! I was so excited and hopeful. Well, I guess we have to keep moving on, right? My initial VL was 6 million, week 2 was 810, and week 4 was 610, then week 8 was 3000. I never missed a dose and followed all instructions. Just wish I knew what happened. I have not seen my doc yet, but I am guessing interferon sensitivity?
Very sorry to see this but sounds like your taking all the right steps now. There's quite a few of us who had breakthroughs, relapsed, or pulled off for other reasons. The good news is there is hope for new drugs to become available from what I hear at the end of this year and/or possibly you might find a local trial in your area.
Hang in there and Good Luck and Don't Give Up!!!
I found a trial in a city that is close to me and would be willing to do the drive, but I have not received a response from my nurse or from the person I emailed regarding the trial. Maybe I am being impatient, but I wish I would get a response!!! I am not sure how long it typically takes to hear from coordinators for these trials. My nurse has never been very responsive so I will be lucky if I hear from her at all. I have an appt. next Friday, but time is ticking! These things close and I would hate to lose out if there is a way to get on it.
I know it is disheartening to get these results, but we must keep going. I have my moments, but I am determined. I feel like I am on a mission now...I just can't let it go!
Yes, you are a null responder. Yes, it's because of the interferon. Yes, you need to get on a trial for the all-oral therapies without the injection. Yes, I did everything right, too. How can those of us who are so diligent...who don't drink...who try to be so good...still have terrible results?
It's because the virus doesn't care about any of that. The virus is nasty. It is no respecter of character or intentions. It just wrecks everything.
But we will keep doing the best we can..and we will trust science to save us...science saves lives and I'm sure a cure is coming for us.
Hi Tired, so sorry you had a breakthrough. I would also call the place that is having the trials. I tend to become a polite pest when it comes to this sort of thing.
I know in S.F., Quest research study included ppl who are considered null responders in their more recent trial of 7977/5885.
Good luck to you
I totally agree. I was so freaking diligent and take care of myself as well, but as you say the virus doesn't care. But we do, and we will win.
On another note, did you have side effects from the interferon? I had headaches and fatigue after my shot, but never had the full on flu like symptoms. How did you handle therapy in general? Just curious.
Not sure if this would be called a null or non responder as the OP did have more then a 2 log drop, on SOC it looks to be a partial responder.
It is important to know how treatment-experienced people responded to their first course of treatment, and the regimen that they were treated with, because these factors help to predict the likelihood of SVR from re-treatment. People initially treated with standard interferon, or standard interferon plus ribavirin, may achieve SVR when re-treated with pegylated interferon and ribavirin. Sometimes, HCV re-treatment trials study a mixed population of relapsers, partial responders, non-responders, and null responders, which makes it difficult to interpret the results.
Null Responder: A null responder is someone who achieves little or no decrease in hepatitis C viral load during HCV treatment. Null responders are highly unlikely to respond to re-treatment with an interferon-based regimen.
Non-responder: Often referred to as a "treatment failure," a non-responder is someone who does not have an EVR or, if they stay on treatment for 24 weeks, does not ever have a 2-log (99%) drop in hepatitis C viral load or undetectable HCV RNA during hepatitis C treatment.
Partial Responder: A partial responder is someone who experiences at least a 2-log decrease in hepatitis C viral load during HCV treatment. Partial responders are more likely to respond to re-treatment than non-responders or null responders.
Relapser: The term relapser refers to someone who has had an EVR or ETR, but whose virus rebounded after they completed HCV treatment. People who had a relapse after completing HCV treatment are more likely to achieve SVR after re-treatment than partial responders, non-responders, or null responders.
According to Can-Do's response, I was just like you. I was a partial responder. I had a 4-log drop, got my VL down to 94, before jumping back up at week 5.
Yes, my side effects from the shot were really terrible. I basically couldn't do anything for two days while I got over it. I didn't like it at all. And I'm a very healthy 39 year old (38 at the time.)
I am 1a, I have not had a biopsy or the IL28B test done. I am going to request the test next week when I see my doctor. MRI shows no cirrhosis and Fibrosure test shows between 2-3. But I am not sure that test is super accurate. I am going to talk to my doctor more next week about all of that too.
I did close to the same thing. My issue was I had R155K + V36M resistant variants. If you want to check to see if you have resistance to the protease inhibitor, ask you doc to order the Genosure test from LabCorp. It will analyze your variants for resistance.
Be aware the virus will morph back into the wild type virus in 6 to 12 months so have the test soon.
I am so sorry to hear that the Incivek did not work for you. I believe there are others on the 5885 who getting good results.
I think Ninezero is on this without riba, though I could have it wrong. There are so many I get confused. He is doing well on the tx and is able to work in a highly visible position
I just wanted to tell you I am so sorry to hear your news
I had this test done the second week of treatment. How did yours read? Mine said I was sensitive to both PI's and no mutations found. Then, at the bottom there was a part where it said mutations observed and it had a lot of types under incivek and only two under victrellis.
You are probably considered to be a partial responder. There will probably be a "wash out" period required before you can start a trial, so don't be too impatient.
My hubby had a viral breakthrough on triple therapy with Incivek too, so I know how upsetting this news is.
Hang in there.
hi im so sorry that you relapsed it must have been heartbreaking i hope you can give your body a chance to recover and that you get accepted for trials and have success. wish you all the best for the future and take care of yourself
My 7977/5885 consent form says "must advise all medications taken within the last 30 Days. Some medications are not allowed and the study Doctor will discuss these with you in detail" Nothing about anything longer than 30 Days and doesn't really say within that period what drugs are not allowed. You could look into new trials if you are interested.
I had the Genosure test done within a month of failing triple on Incivek. I had double resistant variants to protease inhibitors, V36M + R155K.
It's why I failed Tx. Starting VL = 520,000 IU/mL; week 4 = 54 IU/ml; week 8 = 127 IU/ml; week 12 = 2,636 IU/mL so treatment was then stopped.
BTW: The virus starts out as wild type, then, if you have resistant variants, only resistants will remain after several weeks or months of Tx; then the virus morphs back to wild type ~ 12 months after Tx ends. So I'm not sure why you were given the test 2 weeks into therapy. The variants are probably not dominant at that point.
Thanks Hepcat. I was told by someone else that they could not understand why I was given this test as well. BTW, I made a mistake - I thought this was on my two week labs, but it was before I even started treatment. The results were given after I started treatment and I just had the date confused with all of the other labs. NO SVR for me - never even made und. Was taken off of everything at week 8. Starting VL was 6 million, 2 week vl was 810, 4 week vl was 610, 8 week vl was 3000. Not very many people have much info about the genosure test, but now hearing two people say that the test should not have been given this test is odd. Hopefully I can get some answers when I see my doc. Thanks again!
I meant to continue the above post...I just stopped all meds last Monday and I guess I am still feeling some sides from whats left and dealing with my body freaking out from just stopping everything. I am hoping that if I am able to get on this trial, that it won't be a matter of waiting too long!
I wanted to come back and say that I know how you feel. I did a tx back in 2008, got to UND, stayed that way till 6 weeks post. It came back with a vengeance.
I asked for advice from Dr Dietrich and he said to rest up, take care, get my body and soul healed and then try again with something different.
I am really sorry this has happened to you. My thoughts are with you
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