Hep C Discussion Forum

Excellent news, Paldendrolma!  The BMS combo of Declatasvir/Asunaprevir is what Japan just got.      

I don't know much about that combo, but have read a bit about the declatasvir, and it sounds like a winner.  

Hi Julia, I`m so sorry the virus came back, how disappointing.  Take some time out to get on with your life now while you`re waiting for the next treatment opportunity to come along, which it will.  Thanks for sharing your journey with us...I wish you all the best of luck next time round.  Take care and do keep in touch.

Julia:  Thank you so much for keeping us updated.  Everyone is following the clinical trials closely and appreciates your candor.  I'm so sorry it didn't work out this time but your time will come for SVR.  I think of this as a marathon not a sprint and I'm sure my time will come as well.

Lauralou:  Congrats!  I hope you will keep us updated on how you are doing and continue providing support for those who need it.  Your experience and support is invaluable to other hepc sufferers.  We all wish you the best.  

Good bye.

Andrea, my trial was a phase 3 and according to my doctor my doctor my liver is still functioning well even though I am stage 3 cihrossis.  I am being treated through a Hep C clinic at a large hospital in my town.  I do not have insurance nor am I financially secure enough to afford treatment.

I believe you will do well because from what I read you have SVR 2+ months after treatment.  My virus came back within the first month after treatment.  I was compliant with the protocol.  I felt like I was getting my energy back.  Then about 2 weeks after I stopped medication I got a bad cold and the fatigue started coming back.  In the back of my mind I had a feeling that the virus had returned.  

I too have had the virus for 27-28 years. So if I have to wait a little longer..... so be it!

Julie, you sound like one of "us"

I have a fight or flight reaction I used to flee but have become a fighter and hope not to upset anyone with my results.  If everything was that easy,I wouldn't need the support of my hepcfriends.  I believe it is important to let people learn about the good stories and the not so good stories.  

Let's face it...... this is reality and I am grateful to have people like Laura share their good news.  It gives me hope and I know I will also make it... it will just take time.  This is a way for me to have patience which is a virtue that I am still working on

J lynch I was on the bms clinical trial which is the topic of this thread.  Laura I appreciate your posts and am truly happy that it worked or you.  I know that not everyone will respond the same to these trial drugs.

I also may have been in a different group than you.... I was treatment naive with compensated liver.  I had no adverse side effects to speak of and it was only 3 months of treatment.  There are many people out there who went through months and months of interferon in the past and were non responders.  I consider myself lucky.

I apologize for wanting to share good news. I did not know I was going to upset anyone. I will not post anything anymore here.

what treatment were you on that it came back?

I just got my 8 week post trial viral load back and I am still undetected! The lab result read "Target not detected"!!!!

In just three more weeks my blood will be drawn for my 12 week post trial viral load.

Andrea and everyone else please let me know how you are doing...

SVR here we come!!!

Hi Julie, Sorry to hear about your results, but let's wait for the retest. I didn't even know they were giving these drugs with Ribavirin. I am not a fan of Ribavirin, having suffered through treatment with that and Interferon in the past. I just did the triple therapy. finished the treatment on April 4 and I don't even know the 1 month results yet. They said they'd call me if there was a problem. I decided not to call them, I'll find out my one month results when I take my 2 month blood tests. BTW, if you had Ribavirin, I think you would have felt tired, possibly had a rash, and other symptoms. Your hemoglobin would have dropped a little as well I think. Anyway, I think they are truly going to find a cure. Keep your chin up. I'll post results when I get them. I have a stage3 biopsy and I worry too, so I'm thinking of you.

Thanks, Julie. I know the riba wildcard, especially for cirrhotics, is a key question in some of these trials. We're a trickier treatment group and I'm ever curious. Best of luck with the retest and do let us know. Don't be a stranger. 

wayne

Sorry, Julia.  That is a tough one, but it won't be long before you can try again, and next time with great results.  There should be a whole bunch of people starting near the same time frame.  Hopefully, me too.  We can all keep each other company.  

Hi Tig,

Thank you for your support.  I am grateful to have found this site and find comfort in reading about others who have or are in "my shoes".  I am also grateful that we have come a long way in the treatment of HCV.  I have waited a long time to even find doctors who can help me (being uninsured) and will just have to wait a little longer.  I feel the best thing I can do at this time is to keep a positive attitude.  Sometimes it is hard but I have a great support system in my family, friends and doctors.  I now also have all my new hepcfriends who share their experience, strength and hope.

Congratulations Mag on completing tx and being UND. You were very fortunate to have found a trial with little or no sx - good for you! It's great news to hear you have been feeling better since wk 2 as well. What relief that must be!

Best wishes Mag on a new beginning. 

Hope everyone is doing well after finishing meds last month. I've been feeling fantastic lately, very energized, clear headed and can really tell the difference between having the virus and no longer having it, it's like a night and day experience. Since there weren't any side effects from this med combo, I was able to experience a very doable tx this time around and actually started feeling great around week 2 while on tx and continued to stay that way through the end of 12 weeks.  I'm hoping anyone else that participated in this trial also had a similar experience and felt like this tx was very doable for them.

I got the news I was really waiting to hear and my 4 week EOT VL came back undetected !

It's so great hearing this after after a failed grueling 48 wk tx and relapsing in 2007, one month post EOT.

if anyone is looking for a great med combo and can wait, with docs advise, for this combo to be FDA approved, I would go for it. That's just basing my opinion on my own experience, and there are a lot more great tx's still in phase 3 trials or getting their FDA approval very soon, it's all just right around the corner! 

Mag

Lauralou, I am so relieved for you. I haven't gotten my 4 week post trial results yet. I think they were drawn on may 4. If I call, they may be available. I probably won't call. I'm waiting for my 8 week appointment. I am hoping we will all be cured, I think it will happen. Best of Luck on your next test....and keep taking care of yourself (better than luck!)  Andrea

Wow, Laura, what excellent news!!  You must be so relieved and I`m very pleased for you, congrats!

It was an unusual looking result and it really needed to be retested, and how good to hear this!

Onwards and upwards to SVR! 

Thanks so much for all of the support!

It does my heart good!

MagTX, I have that link and I will find it and post it.

I am also doing some research on the relapse and I will post that when I get it also.

My hep C doc is also very puzzled about this and wanted me retested.

As soon as I get the results of the retesting I will post that.

-

Hello Laura

I was sad after reading your news as I can fully understand the frustration of possible relapse. With all that it takes to be in a clinical trial, the before, during and afterward  when it does not goes well as we had hoped it can leave a hole and a person can tend to blame themselves and wonder where they went wrong. If we had a high compliance on the meds and completed all the meds then we cannot blame ourselves because some drugs work better on some than others. We know GT1a can be harder to cure than GT1b patients but with all the combos coming out within a year or so they will figure out which drugs are better suited for all the Geno types. Hang a there there has never been a better time to be treated in the next year. Gilead's new combo, Merck and Abbvie has some great products coming out and will nail this virus once and for all time.

Waiting with you.

matt        

Hi Laura,

Sorry to hear about the relapse. As your biopsies all showed little liver damage, it's possible the virus remained in your blood. Remember Undetected means just that- it doesn't mean the virus is absent. Blood monocytes often contain virus, so this can be missed.

Your time will come- you don't need to rush. Wait for Sovaldi/Ledipasvir, and you'll be fine. Cheers.

Hi Laura,

Sorry to hear you came back detected, bummer. There are a number of factors involved in all of these trials and treatments and the drugs and/or treatment duration are part of it. As you know already, the newest protocols with Sovaldi with just about anything are very effective. From your story, it's apparent that you're a fighter and after that accident and the recovery you had to go through, you obviously learned a lot about staying involved in the battle. This is no different, just stick to it and you will beat this! 

It's hard to say where your virus was hiding but your treatment was obviously effective against it and possibly had you taken the treatment for another 4, 6 or 12 weeks, it would've been enough to kill all of the remnants hiding behind an imagined wall or corner in your liver somewhere! This is one of the things some will experience on a trial. A trial is a fancy name for practice, some succeed, and unfortunately some don't. But you know that there are already some excellent options available now and in 6 months, Gilead will roll out Ledispavir and Sovaldi together in a single pill, once daily blockbuster treatment that has the highest rates of success ever achieved. SVR is on the horizon, keep your spirits up and hold onto that great attitude you have!! Your day is coming and coming soon, good luck...

Tig