Sorry To hear about it...I just went thru the same thing last week at wk-12. I gave all my drugs & sharps back to the clinic.
Hi Ek1,
I'm sorry to hear that triple tx with Incivek didn't work for you. Based on the earlier clinical trials with Incivek, there is a certain percentage of people for whom Incivek will not work. I think you will be considered a "null responder", as opposed to having had a viral breakthrough, since you didn't become UND (undetected) at any time in your treatment. My husband had a viral breakthrough somewhere between Week 16 - 20 out of 24 on triple tx with Incivek. He became UND at week 8 and remained UND for the next two months, but then was DET with small amounts of virus after that and had to stop treatment in April. In his case, Incivek worked, but Interferon and Ribavirin didn't. This was his third failed treatment.
As others have said, go to www.clinicaltrials.gov and search for clinical trials with GS 7977 to see if there are any for which you meet the criteria. If not, make an appt. with your doctor to talk about clinical trials that he/she may be aware of. If nothing comes along, from what we hear, GS 7977 and other polymerase inhibitors and interferon free treatments should be available in a couple of years, and I believe that will be your next treatment option, as it will be my husband's.
Chin up! A cure is on the way!
Advocate1955
I have failed triple therapy for 48 wks also. I am genotype 1a Not treatment naive. I had zero viral count throughout treatment and when counts were measured 1 week after.....It's back! Cried alot cuz it was long therapy.. a year of my life and it did fail. Waiting for next step repeat labs this Fri and Dr on the 10th of July to talk about options. Have you found out anything about the oral study?
Thank you for the presentation. No, I was never treated with peg/riba or anything else before this.
Hi Eki: This is one of the posts I dread reading. My condolences.
You wrote that you don't understand how this could happen so I'll address that point.
If you believe in what the researcher presents in the following link then it appears the protease inhibitor (Incivek) made great progress against the portion of the virus that was sensitive to the protease inhibitor, but the peg & riba failed to make progress against the portion of the virus that was resistant to the protease inhibitor.
Here is the link:
http://74.43.177.57/courses/2010/pg/pawlotsky/player.html
There are some other very interesting points in the presentation. I highly recommend you view the entire presentation, because you may glean from it other options.
Were you previously treated with Peg & riba? If yes, how well did it work in the beginning? V/r, GB
This Trial looks very promising, and I am going to try to talk my husband into trying it also.
You are still young, and look very healthy, so I wish you luck.
You have such a great attitude, and I am glad you are taking such good care of your health~
I was just thinking how lucky I am for all of you. I can't believe I post my test scores and you guys take time out of your day and read those tests and contemplate my options...offer me moral support....send me links to trials....I am very, very grateful.
Wow, I am really sorry this didn't work out for you. As others indicated it appears you never quite reached UND. I wonder if that makes you a Null responder rather than treatment niave.
Anyway, you are right, that leaves you with a rather sizable box of Incivek and maybe, what..3/4 a bottle of Riba? Your doctor's office might be able to use the Incivek. I know I had an emergency at the end of treating and I was short something like 42 tablets!!
I agree with the others and hope you hang in there and explore the trials. Don't give up hope as there is something out there or coming down the pike that will help you slay this dragon!
Thanks, Dave! It's good to know there are others fighting the same battles.
Sorry to hear this, I failed my first try as well, but my liver was so badd I stayed on treatment for 10 months to give it a break.
As they said in Galaxy Quest - Never give up, never surrender!
There are more and better coming, one will be right for you!
Dave
Hi frijole,
Yes, you can add me to your spreadsheet. I will answer your questions honestly.
Yes, I took Incivek. Yes, I was 100% compliant. I never missed a dose. I was never even really late for a dose. I took it between 15 minutes before to 15 minutes after I was supposed to, depending on how fast I could eat.
I ate fat like clockwork. Yes, 4/20 was my week 1 test.
I got an MRI before treatment, but did not get a biopsy. They didn't want to biopsy me because of the hemophilia.
I also don't understand why this would happen. I did everything in my power to kick this thing and I guess the dice just rolled against me.
Ike
So sorry to hear that triple therapy did not work for you. Hoping that you get into one of the trials and can beat this virus once and for all!
Boy, I am disheartened to read this. I so hope all treatment naive patients will clear and never have to do this again. Did you take Incevik?
You are a null responder as can-do said since you never cleared. Maybe they are calling it a breakthrough because your vl increased each testing. Your test results from 4/20 -- was that week 1? -- were so promising - from 7 million to 90, it is hard to believe this didn't work out. Were you 100% compliant? Did you get a biopsy before you treated?
Sorry for all the questions, but I would like to add you to our spreadsheet (go to my profile and click on the pictures). I think it is important to see all of the results -- not only the successes.
I wish you better luck with a trial -- sorry I cannot give you any information with regards to them.
frijole
Hi Stormy!
Always nice to hear from you. I'm going to take my leftover drugs to my doctor on Friday. I agree that my liver is fine right now, and I can wait for future treatments. Thanks for this!
Ike
I just looked it up. It looks really promising. Here's more information:
http://seekingalpha.com/article/515701-gilead-s-hepatitis-c-drug-poised-to-reach-the-market-as-one-of-the-first-all-oral-combinations
Thanks so much, James!
I am so sorry to hear this...I agree that asking about a trial may be worth it. If that is not offered to you then take care of yourself, it will not be long hopefully before these new treatments are offered to everyone.
Stay strong buddy
Best wishes,
Laura
Please forgive my stupid assumption that you had two geno types at once. Thank you for correcting me. HCV and Hemophilia are almost on the same current for me - sort of - I have serious clotting problems at times. TMI here but when I had a menses it was so bad I would regularly be anemic and had great difficulty with the copious amounts. I have always had a suspicion that my HCV had something to do with this. I am not an expert but I sense correlations and you have spurred me to do some research.
I feel you are just getting the stones out of your path to health realizing what will work on the way. California is so progressive - I would hit the University Hospitals because of the challenge you would represent for them. They might really appreciate having you as a patient. Yikes.
You are an inspiration.
That I was infected twice with two different genotypes?
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It appears to me you only have one Geno -1A. I agree with Pooh.
Sorry to hear about the failed tx and good luck finding a trial for your next step.
I'm so sorry to hear this news, I can't imagine your disappointment. What were your most recent biopsy results? Your liver enzymes look really good, perhaps the damage is not so bad that you need to be in a rush to treat. There are some very promising new treatments a few years out. A clinical trial is also a good suggestion, what is your doctor's advice?
With regard to your leftover drugs, we've given anything we had left over to our doctor (also in SD, BTW.) There are many people that are uninsured and could desperately use them.
First, I am very sorry to hear that the triple med treatment did not work for you. I know it has to be very, very disappointing and disheartening.The drugs, even the triple treatment, just do not work for everyone.
I agree with the others about what can be done in the future (trials, new drugs).
I do not see anywhere in your profile or your posts that you have two Genotypes. All I see is that you are Genotype 1 A. That is only 1 Genotype.
Eki, keep us posted and let us know how things work out in the future and if you start new treatment. People here do care.
Best of luck.
Also, thank you for the very kind words of encouragement. I teared up while reading it aloud to my girlfriend.
Is that what this means? That I was infected twice with two different genotypes?
Thanks so much for the responses!
Thank you for returning with this unbelievable news. Your smile is so bright. One would never know the silent burdon you carry. I am so sorry for this set back but I want to commend you for your valiant efforts. Your family must be very proud of you for diving into the unknown.
I hope some one who is in your particular boat will pop in. We have a few double geno's. The most important thing is not to give up. I am sure you sent those virons running crazy. I would recommend clinicaltrials.gov. That's how I found my first attempt because I had no $. Please let us know what avenues you have considered?
Got my fingers crossed for you.