Lambda study update

Question

Finally posting an update for those who may be searching trial threads.

After treating for 24 weeks (as a geno 1 with the CC allele) with Lambda ifn and Riba I was undetected at 12 weeks, 24 weeks, 1 month post tx. but, 90 day post tx test came back "less than 24."  Wanting a definitive answer I had another test run and, as it turns out, I've relapsed.

Personally, although I always told myself that the treatment may or may not work, having it fail has been tough to wrap my arms around.  I was really hoping that this gentler interferon given for only 24 weeks would be viable for many of us.  So, for now, I remain in the dragon-slaying war although I don't know what my next weapon of choice will be or when...

willbb · Answer

Hi Susan..just saw this and am very sorry this happened. As you know I am also a failed trial participnt ,so I know somewhat how this must be  disappointing for you.
On the positive side .you will have no resistance issues and as you can see by the results we have been reading here lately ,as a relapser you will have an excellent chance of success when you are ready to fight again. 
We will beat this Susan.
Best to you..
Will

spectda · Answer

Hi Susan-
I am very sorry to here of the relapse. I can imagine it is very difficult. I know going through tx again is nothing anyone wants to face, but you responded very well to your first tx so if you decide to try victrelis or incivek my guess is it would do the trick for you. My impression is that the vic sides are being reported as more tolerable for most people on the board. 
Good luck in whatever you decide. I am confident that you will beat it when you decide it's time again to try.
-Dave

Susan_1a_CC · Answer

Thank you all for the comments and most especially, for understanding the situation in a way only those of us dealing with hepC (in ourselves or a family member) are familiar with.

I should point out that I know of at least one person on here, CoStudy, who did reach SVR w/ the lambda however, he was geno 2 as I recall.  So, there is some efficacy to this ifn.

The study was a subgroup of the Emerge study.  I was in a group specifically made up of geno 1's who have the CC allele.  Sides were very tolerable - some nausea, some GI changes, occasional lethargy.  I believe that there may be plans to incorporate the lambda into alpha ifn approaches.  

I do take comfort from all of the advances that have been made of late.  I would consider Incevik but for the itching.  When I believe got infected, I had months of extreme itching that we didn't know the cause of and I can't imagine voluntarily signing up for more itching or being knocked out w/ Atarax.  Of course, I may change my mind ;).  Thanks again for the support - it is a real help.

Willy50 · Answer

I too am very sorry.  I should look the trial up but my impression was that while it was kinder and gentler Lambda IFN was only slightly more efficacious than regular IFN.  

If so, I would have to wonder what would have happened with a longer treatment?  I would also have to say that....with no RVR it seems a little optimistic trial design to expect that 24 weeks total would be sufficient. RVR's would be fine perhaps, but UND @ 12 weeks it just doesn't seem like that would be quite enough.

I know that you must be crushed but at least you should not be saddled with any resistance issues.  You could potentially turn around and treat w/ triple therapy or wait a while and see what else pops up.  It seems to me that you are a responder, although not a rapid responder and your odds would be pretty good with triple therapy if and when you try next. 

Once again, very sorry.  You will get there!!!

willy

curiouslady1 · Answer

From a fellow guinea pig:  This S****!!! Which study was it?  I was also looking into that.  It is all such a crap shoot.  The one thing that we can all hope is that the scientists will learn something new from studying our blood so that the word "relapse" will quickly become a thing of the past.  I am so, so sorry and I wish you the best Susan as you begin to search for a brighter horizon.

UKgirl55 · Answer

So sorry to hear your news. I've been very interested in the Lambda myself. It's in a phase 2b right now. I wonder what the odds are with adding a DAA to the mix? How were the side affects while you were on treatment? Was this the phase 2b that you were on?

Once again, I'm sorry for the news, but there are some good things coming soon.

coeric · Answer

i am sorry to read your news. i also considered the lambda study.  the kinder and gentler interferon sure sounded good to me.  i think two other members may have had good success with lambda.  i always enjoy your informative posts, and will be interested to read of your future plans to kill this dragon once and for all.
blessings
eric

working dog · Answer

susan this is a drag.....can you do incivek?....i feel really bad for you but your cc and your liver isn't that bad yet is it??? guess we'll see you around...i'm feeling much better now off the incivek....had a tough start....good luck and keep us posted....i'll see you up here one day.....billy

nygirl7 · Answer

Oh Susan I am so so sorry I had such incredibly high hopes in your case. You have been such a support around here I wish there was something more that we could do for you other than say I'm sorry it seem so insufficient.