Incivek failed

[lucky64]

I just got that call as well.
My viral count with incivek went down to 300K from 4 Million but then at week 12 shot up to 500K so LUZUR !
My doc gets the big bucks - I don't know why he gave the bad news job to his nurse . . . chicken ****.

I want to stop it all. Why bother running it out to 24 weeks more weeks of being a zombie.
I have 4 shots left and a bottle full of ribivarin, rather have a glass of wine.
This is the second time through this and a tad disheartening.
I am all for throwing in the towel and waiting till another "miracle" drug falls off the shelf.
But by then - precious "Obamacare" will have me before the death panel
because I am over 60, conservative, good drugs cost plenty and lord knows I ain't worth it!
Just venting

[micheall]

I understand what you are going through.I am 63,a HCV 1a,2/2 liver and had a VL of under 2 million.I was mad as hell when I joined earlier this year after completing 11 mos of SOC.The last 9 mos being UND.Follow-up showed it was back.Dr told me of new tx on Incevic.With my VL at 750,000 he told me chances looked good at success.Rested 6 mos and started triple tx in 11/11.In march of 2012 had to stop because of complications.My 3 week test showed UND.I have to wait 6 mos for the next test.I started out saying"I am mad as hell and I am not going to take it anymore" to"I think I killed my hep".If the 6 mon test shows it is back,I will just have to wait for the next tx.I am a fighter and hate to loose.But this is a rough fight.So hang in there.There are others out there in the same boat as you.Keep the faith and we'll lick this.We are survivors and wish to live.

[pooh55811]

If your wife followed all of the doing instructions and did not skip or miss and doses and took them on time with the 20 Grams of fat, then she did everything she could. Some people just do not respond as well.

Since the week 12 VL is so critical because it determines whether one continues treatment or not, I would ask for a redraw ASAP just to be sure there was no lab error. If that redraw still shows virus 1000 or above, then she will have to stop treatment.

I am curious if she was ever undetectable or was the lowest count she got that 15?

If her count truly increased and she has to stop meds, she does have some things in her favor. You don't give her age but at least she is only at Stage 1 fibrosis and that is good. She most likely has time to wait for the new drugs which will come out in probably 3-5 years. The other option would be to get into a good trial but she would want to be sure she was not in the placebo arm of the trial.

As noted, I would definitely get a redraw ASAP to confirm that the VL increased as opposed to a lab error causing the increase.

Best of luck to both of you,.

[Supportspouse]

My wonderful  wife waited 2years for FDA approval of Incivek and did everything right. viral load plunged from 2,000,000 to a mere 15 in week 4...just  got word today at week 12 that it jumped to 2600 .... Have to discontinue . Are we missing anything or all we can do is wait and she take the best care of herself as possible  as she has always done while new drugs are developed?
Feeling helpless and seeking a better answer I suppose. Stage 1 liver disease and genotype 1.

[lucky64]

You seem uncommonly knowledgeable about this - how long have you been 'stricken'.

Besides Incivek I have stopped the Peg and Riba country song as well. According to the directions it can be safely stopped at 4 or 12 weeks - my doc waited until 12 - so I assume I am okay as far as building resistance. We shall see.

I am curious about the stem cell research. It seems to have remarkable results in heart muscle rejuvination. I hope someone is focusing on HCV sufferers.

Thanks for sharing

[willbb]

With the Direct Antivirals(Incivek) now in the equation  there is a chance of patients developing resistant virus. That is why the drug company put in strict dosing recommendations in their  labeling to off set this chance.
If a patient is >1000 at week 4  (no matter how much virus has dropped the recommendation is to stop all therapy as it "could"  lead  to the development of these resistant virus.
If your doctor "does not" know this he should NOT be treating HCV patients and you need to see someone who is knowledgeable about these different treatments.
If in fact  there is" resistance"  now to this protease type the good news is that in time (how long is currently being studied) they may return to being wild type virus and also   ,however you need to be evaluated by someone who knows the ins and outs of this before you would treat again and with what.
Good luck...
Will

http://www.fda.gov/ForConsumers/ByAudience/ForPatientAdvocates/ucm256328.htm


Patients with inadequate viral response are unlikely to achieve SVR, and may develop treatment-emergent resistance substitutions. Discontinuation of therapy is recommended in all patients with (1) HCV-RNA levels of greater than or equal to 1000 IU/mL at Treatment Week 4 or 12; or (2) confirmed detectable HCV-RNA levels at Treatment Week 24 (see Table 2).

[lucky64]

What do you mean "ramifications " of triple treatment?
At 4 weeks the viral count was dropping - I, and he, knew it was supposed to be 1000 but we thought we'd try for week 12 and see if it got lower. He thought 1000 was "unrealistic". Maybe I should get another doctor - I don't know at this point. I have another appointment soon. I will ask then.

Thanks for your advice - I do like this page - I hate Fakebook and sites of that ilk - as a result was reluctant to join the "chat" here.
Glad I did.

[lucky64]

SEVEN times !

WOW ! Hats off to  you. I cried my eyes out the first tijme then let my hopes get too high this time. i will be more cynical next time - but I will try again God permitting . .

Good luck to us.

[lucky64]

Yeah - thanks

[lucky64]

thanks, good luck to you as well !

[lucky64]

You stopped everything? Peg and riba at week 12 too?

[willbb]

Given your doctor does not seem aware of the proper dosing protocols and therefore dosed you erroneously ,I would agree with the above to consider very seriously looking for another doctor as it is very important going forward to be advised  by someone knowledgeable about  the ramifications of triple treatment.

Best wishes to you..
Will

[lucky64]

Thanks - good luck to you and all of us "afflicted" ones.

I think we need a clinical trial on "triple timers".
Lets find something with some Fight in it !!

[lucky64]

Yepperz - I will hang in there good luck to you too

[lucky64]

Thanks, I guess I will hang around (considering the alternative !!)

[lucky64]

same to you - good luck and God Bless

[lucky64]

I guess we just sit and wait for another drug to "appear".
I figure I have time - my docotor didn't want to give up on the incivek until week 12 because the viral count had dropped so radically - but not anywhere near 1000.
Oh well
good luck to you
Maybe we should call ourselves "triple timers" and ask Dr Lok to run clinicals on us ! Stop wasting time with the newbies !! (only joking);-]

[lucky64]

THANKS - SAME TO YOU and all of us

[lucky64]

they could always count the load.
I don't know how this "reply" box works  - so I hope I am not repeating myself.
God Bless and good luck to all of us.

[rockymoe]

Sorry to hear the news. I know how you feel I have heard those words 7 times before. For me it's like a death and it takes me awhile to grieve and then I get back on the horse. Eventually the Warrior comes out in me and I say next treatment I am going to slay this DRAGON!!!
I broke thru on telap trial at week 6 and they immediately stopped treatment.

[Advocate1955]

My husband was told the same thing:  must be under 1,000 by week 4 and must be UND by week 12.  Week 4 and Week 12 are stopping rule points and the guidelines are very clear about following the stopping rules.  It's unfortunate that your doctor had you continue after week 4 as it was futile.
Advocate1955

[nowhine]

Also sorry the treatment failed you. You are not alone. Stay well and take care of yourself. This forum will keep us up to date on the new meds and things looks encouraging.

[LookingForward12]

Maybe I need a new doctor too..... I know the protocol stats.... maybe they just figure I don't do the research too ;) I'll ask for clarification Friday.

[willbb]

It is late ...:)        should be   >1000

[willbb]

sorry arrow the wrong way:

Incivek dosing protocol states that you continue if you  are 1000