RELAPSERS Unite Poll

[beeblessed]

Hey Cyber People,

As some of you may have read, I went through tx with noteable good news but at 6 months post now, I have relapsed.  I'd like to thank EVERYONE who has been so kind and offered comfort to me.  I am doing better today.  I thought a poll would be in order now.  Please participate if the criteria applies to you.  Thanks in advance.

Be blessed,
Bee

[8nickers8]

That is shocking and frightening!!!! I have not heard of anyone to whom that has happened.  Usually it happens much much sooner.  I wonder, did you see the prior labs with your own eyes?  

[gerard11]

I too am a non responder to thriple thearpy. There is new data and research that those who attained SVR and relapse do benefit from there treatment. The newest Hepitatis Central ( online)  has a great article "Are There Shades of  Grey in Hepititas C Treatment Sucess?" It goes on to say:" new research suggests that even previous  non-responders to Hepitatis C treatment  could benefit from the medications they once took."  It goes on in detail of the research done.
I know first hand how devastating it is to have a break through when on tx. This might provide some comfort to you.    Good luck in future tx's.

[orphanedhawk]

Triple tx has only been approved for the general public since May 2011. That's not a long time.
With SOC, interferon and ribavirin treatment, usually if someone is going to relapse it happens by 3 months post tx. Not always but usually.

Our dear friend Bee here has the added problem of being in a population that is harder to treat. Lets hope this will not be true with the new orals.

[can-do-man]

I agree with OH as most of the time its the harder to treat people such as race, cirrhotic, and so on that seem to relapse at 6 months post more often then others.

[mikesimon]

I think relapse occurs much sooner than 3 months.
I went from undetectable per Heptimax <5 IU/ml to 6.85 million IU/ml in 2.5 weeks.
Most people don't test until 3 months or 6 months after discontinuation of treatment. I believe that if relapsers tested earlier with a very sensitive test they'd see the virus much earlier than 3 months. HCV replicates so rapidly that it doesn't take long before you have a detectable viral load.
My only experience was with Interferon/ribavirin and pegylated interferon/ribavirin but I suspect that we'd see the same thing in triple therapy relapsers.

I did re-treat (my third attempt) and increased my ribavirin dose and extended treatment to 73 weeks and achieved SVR.

Mike

[jules2551]

"I did re-treat (my third attempt) and increased my ribavirin dose and extended treatment to 73 weeks and achieved SVR. "
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Hi Mike, just curious about your previous 2 attempts.  What were your previous dosages for Riba and timeframe.  And what was your increased Riba dosage when you achieved SVR?

Thanks!  Jules

[rivll]

My God, man, you must be made of steel.
Tremendous admiration for you.

[nygirl7]

Mike has me beat by a week - had I known I would have continued on for a few more ;) (wink).

I feel so bad for Bee I just dont have the words. I did not relapse but just wanted to say that these new all orals will do the trick, I just know it Bee!

[orphanedhawk]

Obviously, I'm not mike but his situation was complicated by being post-transplant.

[orphanedhawk]

I should have added that I relapsed during my first treatment with interferon/ribavirin. I'm sure it was because I already had decompensated cirrhosis at the time.

[frijole]

Bee

I did ribavirin and interferon in 2005-6 and relapsed.  I did 56 weeks, not due to relapse, but because I was detectable at week 12 (my choice).  Although my first VL test post tx was 3 months post, I knew I had relapsed a couple of weeks earlier due to higher liver enzyme tests.  The problem is most of us do not get a lot of VL tests post so we don't know if we relapse at 1 month or 6 months.  I suspect I relapsed within a couple of months.

[mikesimon]

I started my first treatment about 6 weeks to 2 months post transplant. I was low dosed with ribavirin - I think I was taking 400 mg per day (I weighed about 175 lbs). Pegylated interferon was not yet available so I took regular interferon 3 million units 3 times per week which was, I believe, standard dose. I treated for 52 weeks and never cleared.
6 months later I treated with Peg-Intron at standard weight based dose and 600 or 800 mg per day ribavirin. I cleared late - maybe week 30 or later - and stopped at week 53. I knew I should have treated longer but the Peg-Intron was killing me.
6 weeks later I treated with Pegasys 180 micrograms and 1000 mg per day ribavirin. At this time I weighed about 140 lbs. I was undetectable by week 12 and treated for 73 weeks. In retrospect I doubt I needed to treat that long but I found the Pegasys much easier to tolerate and I was afraid to stop. My doctor/surgeon pretty much allowed me to do what I wanted once I became undetectable. Generally type 1 transplant recipients weren't achieving SVR at high rates so everyone at my center was rooting for me. I really had to push to get the Pegasys approved (it was not yet on my insurance formulary and the hepatologists at my center felt that since I cleared with Peg-Intron I should continue that drug) and the 1000 mg ribavirin. I am convinced that the ribavirin dose was the major factor in my SVR - more than the TX extension. I was just under-dosed the first two treatments.

Mike

[PJ1966]

Not sure how to vote.  I can click the buttons but can't answer the questions specifically.

[babs824]

wishing bee all the best, what a tough thing to relapse...yikes.
u guys are amazing, i had forgotten mike was post transplant. so many of u folks hector  nygirl and oh never cease to amaze me. u are in my prayers. hugs, bags 824

[beeblessed]

Hi PJ, sorry about that.  You just need to post a comment to this one.  My initial plan was to do a "check here" poll, but I discovered I wanted to know more background.

[beeblessed]

Hello everyone.  Thank you all so much for your input!  This helps to put things in perspective and will surely help others along the way.

Mike -- All I can say is.....WOW.  72 weeks and multiple treatments, and increased RIBA.  And so much more.  Incredible and inspiring.  The RIBA kicked my butt big time and I was dose reduced drastically.  When they tried to increase it, I just could not tolerate it and am sure that too probably contributed to the failure.  My docs 1st priority was to keep me "Safe." My tx nurse made it clear -- "It doesn't matter if you get to Heaven with a clean liver.  You'll still be dead."  Or something like that (I forget her exact words).

Thank you everyone!  I am reading all of these responses, and honestly appreciate your sharing your journeys.  It matters.  It helps me process all of this.

Blessings,
Bee

[PJ1966]

How many weeks for each of your treatments?
48 wks

How long before relapsing?
6 mos

Which meds did you treat with?
Interferon/riba

Did you have to treat longer because of the relapse? If so, was it due to protocol or just your docs opinion?
Am currently in my new triple therapy with incivek.  4 weeks today.  Not sure how long I'll treat as yet, but was undetectable at 3 wks (vs. 8 wks 1st time)

[Asuncion]

Sorry to hear you relapsed Bee. It is hard when that happens. This is my story:

How many weeks for each of your treatments?
24 weeks.
Only one treatment so far.

How long before relapsing?
6 months.

Which meds did you treat with?
Interferon/Riba

Did you have to treat longer because of the relapse? If so, was it due to protocol or just your docs opinion?
I am not under a new treatment yet, I am genotype 2b, so I am not supposed to use Incivek or Victrelis, so I haven´t done longer treatments.

My doctor insisted that I tried treatment again for 48 weeks, but I lost confidence in those meds. I want to try Incivek and my doctor told me he supported my idea or that we could wait for a new clinical trial with GS-7977 that he can get me into. I am still thinking about it. My liver has no cirrhosis so I can wait a little.

[beeblessed]

Hi Asuncion,

Thanks so much for your understanding. Do your homework here before jumping in with INC.  Great results but Wicked side effects!   There are high hopes for GS 7977 and I heard about another new drug today (but that one is just in Phase 1).

PJ -- Thanks for your answers!  This starts the comparisons.  

Keep 'em coming people!  It will help more people than just me.  Take care everyone.

Blessings, Bee

[lulu647]

If you are type 2 and have the opportunity for a 7977 riba trial w/o interferon, I would try it. They seem to be having great results

[rockymoe]

As you know I had to stop Triple Treatment VIC at 40 weeks. My doc told me if he had not pulled me when he did I would have gone over the cliff. The treatment was killing me. I went thru the week of crying followed by depression then I was angry and now I am ready for treatment #9. I have to wait till the all oral drug is approved. I won't be able to do any trials because of what the VIC did to my heart and can never do interferon again.
The good news I had an MRI done and my liver is smooth not lumpy, there is a little fat but I lost 50lbs on VIC so it's not bad.I was happy to hear that the
cirrhosis is not too bad for now. I was pulled at 40 and I think I relasped at 8 weeks. Sorry to hear you relapsed, we will slay this dragon.

[beeblessed]

Hey Rocky!  Your situation is unique.  How long did you wait between each treatment??  Have you had the same doctor(s) throughout?  Is there something they can do other than put you through weeks and weeks of meds again??

As for me, the soonest I can treat again would be a couple of years, in anticipation of the new drugs.  Thanks and take care, Bee :0)

[Bill200]

"I started my first treatment about 6 weeks to 2 months post transplant."

Mike, that's pretty remarkable to me.  Interferon increases the chance of rejection and the chance of rejection is much higher in the first couple of months after transplant and also higher the first year after transplant.

Also I'm surprised they didn't make you wait and see how the new liver would tolerate the HCV.  Some people's go bad quickly and other last many years before showing damage.

Anyway I think your doctor took a risk but not one that I disagree with.

[rockymoe]

I had an MRI and my liver is smooth not bumpy and doc says it looks pretty good. Triple tx with VIC was my 8th treatment. I think I have a monster strain.I look at it this way yes it is devastating to hear you relapsed. Some one on forum said those 8 treatments helped. Anytime you are clear the virus helps. He reminded me that I am not losing, I'm WINNING I'm still alive. If I had not treated all those times I might not be here right now!