tx fail

Question

Hi All,

Well...after getting insurance approval in record time last June, I waited for a few months trying to work through some deadlines at work before beginning my fourth round to tx, this time with Victrelis.

I started off with a viral load of around 10**7.  This bounced around a bit during the leadin, but very quickly dropped to around 10**4 during the first 8 weeks of Victrelis.  

Then, over the next two weeks, the viral  load actually started to increase, and we think that represents a resistant strain, so, I have stopped at week 15 (week 11 of Victrelis.)

Hopefully, I'll be around to try the next "new big thing".

By the way, the anemia I experienced on this course was brutal.  In the 11 weeks I was on victrelis, I managed to require 5 transfusions (2 units each) and ended up with an HGB number right around 8.  I also experienced an acute bout of pancreatitis, which was either a side effect, or gall-stone related.  Not really sure, but aye yi yi!  Very painful!

eureka254 · Answer

Sorry that the current treatments still haven't worked for you; how long and hard you've fought is a credit to your tenacity and strength of mind, and my compliments on continuing on with such a positive attitude.  Best wishes to you, and may a cure come soon for you and all.

his3707 · Answer

So sorry to hear this   .  you are no quitter thats  for sure.   I hope and pray that you have time and thank God this is a slow moving disease .   I have to thank you for putting yourself out there. and fighting so hard!   I agree with hrspwrguy  that the next up to bat is going to do the dragon in for all!

can-do-man · Answer

" It is an observation which, for me, is more credible than personal testimony."

Just how then are they getting their info??? Wouldn't what they are telling you come from personal testimony?

I also was in a trial (boceprevir), did 48 weeks. I was a relapser from SOC, anemia was worse but besides that tx wasn't to bad. Nobody said it was going to be like going to disney world.

For me personal testimony from people here that are doing it seems better then second hand info, unless your team cares to come on here how are we to know what your saying is credible?

hrsepwrguy · Answer

You are speaking of drugs that you have no personal expirience with, I do and that is my personal expirience whether you choose to believe it or not, funny I attend a pretty reputable research site as well and have not been told anything of the sort, only praise for the treatment currently availible to the general public.

curiouslady1 · Answer

Don't know about "documentation" on this site.  All I can do is reiterate what I was told by a study coordinator at a reputable research site who is conveying info about the subjects on triples in their research program.  I don't know if its a strong or weak statement.  It is an observation which, for me, is more credible than personal testimony.

willbb · Answer

"according "

willbb · Answer

It is the general consensus that the triple therapy just approved has very short legs. 
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Well it may have short legs ...whatever that means..however they seem very powerful legs given the tens of thousands being  treated  and the 80% success rate expected ,as per data in trilas.
The current therapy  is a very  bright light for patients  that don"t have the luxury of waiting  ...
Hopfully there is something even better(as it looks promising there will be)..possibly  within 3 -5 years acoording to most in the medical community.
Will

hrsepwrguy · Answer

"In fact, the study coordinator informed me today that ALL of the study participants on the triple (ifn, riba and either tela or boce) are having severe side effects"


That is a bit of a strong statement as it has been well documented on this site that many have managed to continue with there normal lives. I myself have just finished with the incivek, lowest hgb has been 11.1, no rash, no major sides that I would consider debilitating, admittedly it has not been a picnic but some like me who are Batts grade 3 act 2 (heavy bridging fibrosis, no obvious cirrhosis) don't really have the option to wait and should not be discouraged to try and treat now, the PI's offer the best SVR % ever presented to date.

can-do-man · Answer

Sorry about your news, from your viral load drop after lead in it wasn't even close to a one log drop. Really treatment should have been stopped then. Interferon seems to be the main problem here...... Hang in there as like people have said there is newer drugs being tested.......... Best to you

aj7538 · Answer

So sorry to hear this news. There r better drugs around the corner with less harsh sys. Good luck

curiouslady1 · Answer

Our PI brought everyone of her research team to AASLD and she won one of the three awards given there.  I say this because the people I am working with are very skilled.    I am informed that it has been the thrust at the University to counsel people to wait if they possibly can.  Although this team does do some trials with the triples; they are seeing too many adverse events.  In fact, the study coordinator informed me today that ALL of the study participants on the triple (ifn, riba and either tela or boce) are having severe side effects and some so severe they are unable to work or engage in any meaningful actitivy at all.  They expect something to be approved in the next couple of years but stay tuned for Stage III trials as well.  Gradually, (Phamasset at least) is looking at nulls and cirrhotics and others who would not be considered for trials in the earlier stages.  It is the general consensus that the triple therapy just approved has very short legs.

Bill1954 · Answer

Oh boy that bites. As others have mentioned and I’m sure you’re aware, big bucks are driving research for better, more efficacious drugs. Maybe you'll be in line soon for one of the NS-3/NS4a + NS/5b combos shortly. How’s your liver holding up; are you in a position to wait a bit longer? Golly, sorry to hear the news. I relapsed once and I know it’s discouraging.

Good luck and take care-

-Bill

ASmile4U · Answer

I am sorry to hear this. Just this week I too have had an increade in viral load. Having done Incivek, I was down to 53 at week 12. Very discouraging, however I too am hopeful that new promising drugs are right around the corner. That's the word from my transplant center anyways. All the best to you...We'll do it, just gonna take an extra step or two! :)

neptune235 · Answer

My initial viral load was 24,000,000...it dropped to around 14,000,000 at the end of the lead in.  at 4 weeks on Victrelis, it was 53,000, and two weeks after that, it was at 34,000.

But then, it started to rise...first to 75,000, and finally, at last draw, was 319,000.

The new oral meds do seem promising, and I hope that they can fe fatstracked all the way through approval.

willbb · Answer

Very sorry to hear this,however with what is in the pipeline down the road,there is always hope.
Best to you....

Will

frijole · Answer

neptune
I am so sorry.  We all have had such big hopes for the PIs.  I don't understand your viral loads, with the stars in them and wonder if you could give the pretreatment vl, the lead in, and all the results after you were on the VIC.

I am ending week 12 with VIC and the results have been good.  The anemia has not been fun, but I don't think I have gotten into the 8s.  I am so sorry this didn't work for you.
frijole

hrsepwrguy · Answer

I am sorry to here this as it s@#$s, but on a good note I had a very long and in depth conversation with my study coordinator yesterday who attended the recent AASLD meeting and is very confident that soon with the new drugs in the works that hep c will have met it's match, of course only time will tell for sure and the approval process well is the approval process and will take a little time. Good luck to you and I wish all the best moving foward.

neptune235 · Answer

Thank you for that...really, what a sweet thing to say.  I'm getting okay with it, although, when I started, I really thought I was gonna kick this dragon to the curb.

nygirl7 · Answer

Oh Neptune I am so sorry. If anybody deserves to succeed it's someone like you who have fought so hard and so valiantly. I'm just heartbroken to read this. There are no words to express how sorry I am.