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Relapse

Another 72-weeker bites the dust:

Genotype 1a, clear at 28 weeks, continued clear to week 72. Three-month post PCR, viral load up around the original level.

I learned a lot over the course of the process that will hopefully help me next time. When I started I really had no idea about the importance of rapid viral clearance. And my doctor and NP, who are with a hepatology team at the U. of Maryland, were no help. (Actually he's the chairman of the hepatology department at UMd.) Regardless, no one the significance of a rapid viral response vs. a slow viral response for treatment outcomes. That left me to my own devices, and being a pretty hard-core guy, I decided to weather through 72 weeks.

What did I learn? Be extremely mindful of how successfully you get a rapid viral response and use that to make judgments about continuing treatment. Of course this, like everything, depends on your level of liver damage. I think much of the research that has come out in the last two years reinforces the idea that it's not how long you treat but how rapidly you achieve clearance that is the best predictor of a positive outcome.

Thanks to everybody on the board for their support and encouragement throughout.

17 Responses
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476246 tn?1418870914
Oh Marc, that is terrible. I'm so so sorry that you had to go through such a long treatment and relapsed. It is heartbreaking. My prayers are with you.

Marcia
Helpful - 0
230202 tn?1370793579
Sorry to hear this Marc.  
I hope you are okay and I wish you all the best
Take care
Linda x
Helpful - 0
Avatar universal
I want to thank everyone for their kind and supportive words. I guess the silver lining of my relapse is that I need to hang out with all of you for a few years longer. I'm looking forward to learning from the collective wisdom of the group.
Helpful - 0
91778 tn?1252555170
I am so sorry to hear the news. I know how heart breaking it can be, being a relapser 2 times myself. Hope you start to feel better soon! I now it takes time to rap your head around it. but take care of yourself, And know you are not alone! Debi
Helpful - 0
412873 tn?1329174455
So very sorry to hear this news.  My heart goes out to you.

True to form, though...you bring some sound advice to the table with every post. I couldn't agree more with the RVR aspect.

You'll win it next time.

Thank you for always giving great support and advice here.

I wish you well.  Please keep us posted.

Isobella
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Avatar universal
Marc, I am so very, very sorry to hear of your relapse.  I wish you the very best with your future decisions with treatment and I know you WILL beat this.

I also want to thank YOU for your support on this forum!
Helpful - 0
Avatar universal
I am so sorry to hear your bad news.

When I first started tx you gave me some real good advice and told me to look for a silver lining in the clouds during tx.  At some of my weakest points during tx I remembered your words and it gave me strength to continue.  Now my tx is over I did find some silver linings during tx and learned some valuable life lessons.  I hope you are able to do the same about your relapse.
Helpful - 0
Avatar universal
I was so hoping for a different outcome for you.
I'm really disappointed.
Hang in there Marc.
Helpful - 0
427265 tn?1444076436
I am so sorry to hear about your relapse. As a fellow 72 week extender, we think we are doing all we can to increase our odds of SVR, as a cirrhotic or slow responder, and yet it all comes down to a **** shoot it seems. Such a fickle disease this is.......But like you say, we learn from our experience and hopefully will increase our odds of SVR if we choose to retreat.

Best wishes on whatever course you take down the line...........Pam



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Avatar universal
Your story is why I chose to use almost twice my recommended dose on my second, and successful tx.  My first round was also a late clearance story, and I really was not able to stay on tx long enough after initial clearance (six months), to get the SVR.  I was on for a total of 15 months, and had also reduced the Riba by the end due to anemia.As expected I relapsed also.

Second time around, using a highly experienced HCV doctor, I used what amounted to a 'double dose' of Peg-Intron, and full dose Ribavirin, along with Procrit as needed.  I got clear around week 19 (still somewhat later than desirable, but within bounds for extended tx), and I kept the pedal to the metal for 72 weeks, staying undetected throughout tx, and now for six years after ending tx.  

You are absolutely right, the earlier the response, the better your odds, and getting clear after 26 weeks is generally considered as too late to get the SVR.  I am a believer in using a tailored dose as well as tailored duration in these difficult cases.  If the standard does doesn't get you undetected within 20 weeks or so, then I think it calls for a more powerful dose, that WILL get the clearance within that time.  The only catch is that I also firmly believe that this higher dose must be maintained throughout the full course of tx....and in these cases of later clearance, after 12 weeks, but before 26 weeks, the extended tx to 72 weeks is definitely called for.  I know several people who have done 24 months (104 weeks!) of tx, and gotten the SVR!!   If you can clear before the magic 26 week point, and keep the dose up to full blast, then extend for AT LEAST 72 weeks, then I think the odds of success are very good.  

As you experienced, 28 weeks to clearance is too late.  Maybe if you had done 24 months it COULD have worked, but who wants to determine it by going that long under shakey circumstances.  Next try, maybe you can add the Vertex PI, do a high dose of Peg, and keep the Ribavirin at full tilt...going for as long as possible.

The other question is how was your Riba dosing?  Did you take a full dose per your body weight, and keep it there???  Did you fully metabolize the Riba?  This would have meant flirting with anemia throughout, or that the dose was really being fully metabolized.  In people who don't metabolize the Ribavirin effectively, sometimes a higher dose is warranted. Ribavirin and full dosing is essential to preventing relapse, I am sure you know.

Sorry about your relapse after such hard work.  Check out Johns Hopkins, and the doctors running state of art HCV trials there.  They get results.

DoubleDose
Helpful - 0
Avatar universal
I'm terribly sorry about your news. There are better days ahead.
Mike
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276730 tn?1327962946
I am so sorry to hear of your setback. You will bite the bullet again when your ready and succeed.
I know how you are feeling...recover get back to life for awhile.........
Wish you well .


Charm
Helpful - 0
87972 tn?1322661239
I’m so very sorry to her the news; as a fellow relapser, I can understand the disappointment I’m sure you’re feeling right now.

I couldn’t agree more; I also believe it’s mostly up front with HCV; we’ve all seen this happen too many times.

What do you have moving forward? Have you had a moment to discuss plans with anyone yet? When I relapsed in 2006, my original treatment doctor insisted I take a referral to a hepatologist; he said it simply made good medicine. I assume you might try the same?

Best to you; keep us informed, and as soon as you feel up to it, sign in on the 72 weeks sheet:

http://www.medhelp.org/posts/Hepatitis-C/72-week-club---Updated/show/410633

Bill
Helpful - 0
Avatar universal
HCA
I could not agree with your conclusions more heartily-you have to knock it out before a treatment resisistant variant forms!!!!!!!!!
All this stuff about remaining UND for so many weeks is bumble
I am very sorry you have relapsed,but words on a message board don't mean much-it's you that will have to bite the bullet again,presumably with telaprevir.
Best wishes,
Helpful - 0
Avatar universal
I'm sorry to hear your news.  Please give yourself a break for a bit and keep us posted on how you are doing.  You WILL get there, some day.


best always,
jd
Helpful - 0
Avatar universal
Marc, I'm sorry to read this.  I KNOW next time to treat you will get it.

I agree with you about viral kinetics.  I believe there are things one can do now that will affect that and it is a given that the PI's and other new forms of TX will also positively effect that as well.

It's going to happen.  I'm sorry that it didn't this time, especially after so much work.

best,
Willy
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96938 tn?1189799858
Sorry to hear the news.  I hope you have fully receovered from the treatment and get focused on other parts of life for a while.  HCV can consume so much attention from a person and sometime we need to just take a break from it all.  Good luck.
Helpful - 0
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