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1777980 tn?1314465308

incivek failed

I just received bad news.  I finished treatment with incivek in Jan. received 6 mo blood test, relapsed.  I was undetectable at wk 4, 12, and post tx.  I am just totally crushed.  I have no idea what to do next.  This was  much tougher to deal with than previous treatments.  I was so hopeful. I hope the rest of you get a better outcome.    
41 Responses
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Avatar universal
what copyman said--get another pcr--i don't remember who it was, it was several years ago-their 6 mo post camr back +, re-tested and was und-the test are not 100%- good luck
Helpful - 0
Avatar universal
So sorry to hear.im on incivek right now and at 4 wk. So iwill see friday.i got to univ of penn. And therr arr other trials out there. So be patient. Thereis a pill form of treatment witjh minor side effects.i coulndt do study due to history of cancer. So im hoping this works! But at least there is a light!  Stay strong!
Helpful - 0
1972385 tn?1343827076
Hi Robert;Just read this and my heart just fell.I to am a relapser,I'm 63,did the Incevic but stopped for complications.Was UND after 4 weeks on Incevic and stopped at week 11.Still UND 4 week follow up.Next 6 month follow up in Sept.I am prepared(with all the help and support of the people on this forum)to accept the bad news if I get it.But you and I are not alone.New treatments are being developed.I think I got the HCV in the late 60's when I was in the army.I and a lot of others got injected with the air jet injectors.Then I gave it to my wife in the 70's.I am not giving up though.I will stay here and stay informed and make a wise decision before I take a 3rd tx.Stay strong.
Helpful - 0
Avatar universal
Sorry about the bad news.  It sounds like you have a positive attitude, though, so hang in there, take care of yourself and wait for new treatments.
Helpful - 0
789911 tn?1368636783
my heart just sank reading this news.  I am so sorry about it :{    
Helpful - 0
1995824 tn?1330379049
So so sorry Robert! I echo the thoughts and well wishes of everyone here....there will be a solution for you. Have faith.
Helpful - 0
2136167 tn?1374728651
Robert very very sorry, pls regroup soon and think about new ,better Tx's coming soon.Do not give up, you will cure next time ,as you write ,you can still aford to wait. Keep taking good care of yourself!
Helpful - 0
2114467 tn?1358210256
So sorry to hear of your news. Stay strong Robert,as I hope a future newer tx will be available and successful for you. Sounds like your healthy lifestyle will work in your favor.
C
Helpful - 0
Avatar universal
I'm sorry to hear about your HCV returning. As a incivek treater myself I can only imagine how devastating this news was.

There is hope still, many new drugs and not far off. Take good care of yourself and please reach out if needed to help deal with your let down.


best wishes,
Laura
Helpful - 0
Avatar universal
I failed too but only after Incivek/Riba/Peg for 12 weeks.  I am so sorry for this.  But new drugs ARE on the way.

I suggest the Genosure test to determine if you have Resistant Associated Variants to Incivek.  It's a new test from LabCorp.

It will get better...
Helpful - 0
Avatar universal
I just want to cry.  Robert, I'm so sorry.  There are several of us on the forum that are within weeks of our 6 month follow-up.. myself included.  This is devastating news.. but, it is not the end.  Keep positive, new treatments are on the horizon.  
Helpful - 0
Avatar universal
You need to keep a positive attitude...I know you already know that.....
When your time comes, you'll pass with flying colors & you can turn that frown upside down gurl.
We are our own worse enemies...don't let anxiety get you....
Helpful - 0
Avatar universal
x0x
;)
Helpful - 0
1856494 tn?1340542614
You have an amazing, inspiring attitude.  Thanks for the info.
Helpful - 0
1856494 tn?1340542614
It's not bloody fair.  I want to throw up.  I am sheetlessly scared of the same result.  On purpose, I have avoided my Doc and this place because of this fear of being smacked with the 'back where you started' card.  You are incredibly brave, the rock.  I am jello and haven't even found out yet.  I am on the fence wondering if this lost child within can ever come home to stay.  I am so sorry for you and your family.  Thank you for letting us know some of your path on this wretched journey.  

My date of truth is in Sept.  I am still holding my breath.  Robby - What advice can you give us chickens?  What does this mean to you?  
Helpful - 0
317787 tn?1473358451
Oh my God!  I am so shocked and so sad for you, I hardly know what to say. I have relapsed in the past, know how it feels.  I am just so very sorry.
When I relapsed, Dr Dietrich told me to rest, heal my body and spirit, wait a year and try again when new drugs came out.
I just feel terrible, you worked so hard and you are right, this last tx was the worst.
My best to you
Dee
Helpful - 0
Avatar universal
Robert sorry to hear about your relapse. I think that the new drugs in the pipeline will improve svr numbers significantly.
I would like to get something cleared by you. Have you treated before in the past before treating with Incevik? If yes, I thought prior relapsers and non responders are treated for 48 weeks instead of 24 weeks.
Helpful - 0
Avatar universal
Robert, so sorry to hear that you relapsed.  As others have said, maybe you can re-test right away to be certain that it is a relapse.  Make an appointment to see your treating doc and ask his/her opinion, but as others have said, it is very likely that you have either a more resistant virus and/or you are a poor responder to Interferon.  I'm so glad to hear that you only have moderate liver damage, by that I'm assuming that you mean f2 or so?  And I agree with OH that your liver got a wonderful break for 6 months, which will have helped.  But because of your age, you are at a higher risk for more rapid progression of fibrosis and/or for developing liver cancer.  I would recommend that you ask your doc if he/she would see you more frequently, perhaps every 6 months to once a year, and if he/she would order more frequent labwork, perhaps every 3 months, to monitor your liver function closely.  Not sure if/when your doc might want to do another liver biopsy to check on your fibrosis, my guess would be every 3 years.  You may want to ask your doc if he/she would consider recommending you for any all oral trials that may come up in the next two years or so.  Or you can search clinicaltrials.gov.  Otherwise, hopefully it won't be a long wait for the new all oral meds, and hopefully you won't progress to Cirrhosis.  In the meantime, keep doing what you're doing, give yourself time to process this new piece of information about relapsing, stay alcohol free, drink coffee, eat liver healthy food, exercise, maintain a good BMI, and avoid meds that are non-essential and supplements that your doc hasn't approved.
Take care, and hang in there.
Advocate1955
Helpful - 0
223152 tn?1346978371
rock, I am sorry.  Especially when you were UND at weeks 4 & 12.  Do you know the sensitivity of those two test?  If they were the standard <43 tests did the lab report specifically use the words UNDETECTABLE?

What happened on your first treatment (S?) When did you clear, were you compliant, do you have any other issues that decrease your chances of clearing?  

Again I am so sorry .  Dealing with relapse, especially when one has done so well on tx, is devestating.  I hope you take time to regroup and be drug free for awhile.

frijole (bean)
Helpful - 0
1840891 tn?1431547793
Oh man, I am so sorry to hear this. I keep thinking about how I would feel (and it could happen to me too), and if it was me I think I'd have to spend a few days crying and wallowing in self-pity before I'd even be ready to try to pull myself together. Everyone talks about the happy dance when we SVR, but on the flip side it also has to be okay to just cry and complain a while at first if it doesn't work out. Do whatever your grief requires now and then after you've let some of that out you will be in a better position for considering your next step for healing. I hope the period of grieving passes quickly for you and that your doctors soon help you plan another way to beat this dragon. You have all my sympathy and my best wishes too.
Helpful - 0
1777980 tn?1314465308
Thanks for all your comments! I want to get as much information out there as possible.  I did 24 weeks on incivek because I was RVR at 12 and stayed undetectable at 12 weeks. On the Peg / rebitrol treatment I relapsed at the end of treatment.  I was also asked if I got monthly blood test, no only post tx and at 6 mo.  I will try another treatment when I see something that has a good chance of working.  I have moderate liver damage so I have time.  I don't drink, and exercise every day and try to eat well.  Thanks again for your support and hope you all do well.
Helpful - 0
Avatar universal
Like the others I'm sorry for your bad news. I know it is a shot in the dark but did you re-test? I would immediately draw new blood and test again with a different lab,  using the most sensitive test the lab offers.

Best of luck
Helpful - 0
Avatar universal
I'm so sorry for your loss.   I am thinking that the new Interferon free Tx will be here soon, so keep up the good work, with your healthy life-style.
Helpful - 0
1652596 tn?1342011626
so sorry for the news.  take care.  belle
Helpful - 0
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