ding ding...round 2..responder/relapser in this corner.

[uncledudeness]

....nasty, disgusting, mutated, smelly, ugly HCV virus in the opposite corner....


ME= GT 1A, CC variant of the IL28B gene (big deal), late stage 3 probably 4, fatty liver, low platelets (67k), prone to anemia, and really pi$$ed off....weighing in at 220 lbs....

SO, i had my post (failed) treatment appt with the liver guru at Yale....white coat and all. he presented several options to me; the first being triple tx with Incivek...the last one was to wait for liver failure in about 8 years....guess which one i chose? i'll probably start mid summer. i want to get in as much fun-time as i can to make up for last year. ride my motorcycle to nova scotia or something like that; or maybe it was Utah....

i had a real big problem with anemia last time on tx. i was up to 120k units of procrit a week, and i had to go in for a blood x-fusion; 3 pints, and a tire rotation.

so i guess my question is this; has severe anemia  been an issue with other peeps on incivek during treatment? the other sx's on SOC were tolerable for me, and i suspect they'll be the same.

thanks to everyone for being who you are....

[gene53]

Welcome back, I was sure sorry to read about your relapse last time. I had relapsed twice myself after 2 different 48wk treatments, relapsed both times and it suc*** big time.
I am currently doing tripple tx, just finished the 12wks of incivek last week.
I had no problem with anemia but since you have a history of anemia issues this is something you will want to be looking out for.
anyway I hope you enjoy some time off tx and Utah, 4corners region is a great ride, ( Grand Canyon, Monument Valley )
Good Luck

[flcyclist]

I can't comment on the Incivek, but just wanted to say I admire your great attitude and determination to beat this.  With this approach, the higher rates of SVR with the new PI's and a good tx team behind you, you are bound to beat it the next round.  We're all in your corner cheering for you.  Give em h*ll.  

[frijole]

You are a funny guy.  You only thought you knew what anemia was.  With 120 units of Procrit a week and still having 3 transfusion ---- well I cannot imagine what you are in for.   I hope you have good shocks on that bike because you are in for a bumpy ride this time.

Personally I chose Victrelis because its main sx was anemia and I thought I knew how to deal with that from my fist round.  What I have experienced with tx this time is much more anemia and it coming on much sooner.

Anemia is not touted as a major sx of Incevik, perhaps because they did not allow procrit in the trials, but it seems to be just as big an issue with Incevik as victrelis.  I am shocked about the number or people getting transfusions this time and still having major issue with insurance companies getting procrit approved and doctors starting it soon enough.  

In my opinion, with your history of anemia, you need weekly CBCs from the start.  And the minute your hgb hits 10.5 your doctor needs to start the approval process for procrit.

Personally, I am fine now -- my hgb has been in the 10s for 5 weeks now and I can function all right.  My hgb has only dropped as low as 8.9 but I have been seeing a lot of 7s and even 6s.  So be careful and welcome to the ride.

frijole (bean)

ps - my bx sounds like yours except I do not have low platelets - grade 3-4, stage 3&4 (about 50/50) and moderate to severe steatosis.  This is round 2 for me and so far, so good

[TexSunflwr]

"he presented several options to me; the first being triple tx with Incivek...the last one was to wait for liver failure in about 8 years...."  

Liver failure or triple tx? Wow, that is a no brainer! I'm glad you're choosing to treat. I just finished the 12 weeks of Incivek, and it is tough, but compared to the alternative of liver failure, well, my heart goes out to those with end stage liver disease.

As for anemia, I am anemic. My hemoglobin dropped to 8.9, and my doctor reduced my Ribavirin from 1200 to 800. I did not receive a blood transfusion, or any rescue drugs. My Interferon was not adjusted. This seemed to stabilize the hemoglobin(currently at 8.6 and holding), and my other blood levels seemed to improve.

I say go for it!

[fredpacc]

I am also a relapser and finished triple tx with Inciv 16 weeks ago - I am still UND. I did have a problem with anemia and was put on Procrit and finally stopped Riba for almost 3 weeks but it doesn't seem to have affected my status. I think you have a good shot especially since you are a CC, I am a CT. You will just have to stay on top of your anemia..Best of luck to us all.....Fred

[working dog]

i treated for the first time with incivek...also cc  1a...2/2....i tanked right off...from 15 to 8 in 2.5 weeks...once during tx i got my hgb up to 11 after stopping riba for 10 days...then tanked again once i started the riba back up...most of tx i spent in bed with my girlfriend taking care of me all the time...i couldn't have done tx without her...the incivek works great..thats the good thing...i think if you have someone to help who will be there for you you might want to tx this year.....maybe start an ad before tx...you have to forget about the bike...no two wheels...and maybe no cars or trucks...i couldn't drive far at all...like a mile at a time...i started tx 7/11/11 and just getting the bikes out now....good luck and keep us posted....billy

[pooh55811]

I treated with triple meds with Incivek. I started with a Hemoglobin of 15. 4. The lowest it got was 11.1 and it took weeks and weeks to get there.
  
I am off Inc. now and my Hgb is back up in the 12 range.

Here is wishing you good luck and smooth ride on Inc.

[hrsepwrguy]

Really glad to see your sense of humor is back, wishing you all the best moving foward.

Keith

[willbb]

Nice to see you again UNC....You will nail it in  the 2nd round..
Best ...
Will

[can-do-man]

Your a true fighter, give them hell Unc.

[Advocate1955]

My husband did not have problems with severe anemia on triple tx with Incivek.  He had some symptoms of anemia in the last two weeks of Incivek (week 11 and week 12) but his hgb improved as soon as he completed Incivek.
Advocate1955

[BoceprevirGal]

You go, and beat the @%&* out of that nasty virus!!
     I'm treatment naive genotype 1a, and got the anemia early on, in treatment. Like everyone said, stay on top of your labs, and as soon as you start to get low, get the Procrit shot. I found the anemia to be one of my worst symptoms, as it affects the quality of my life...by making it hard to work, house-work, etc  Good luck!

[Proactive]

Good idea to take some time for yourself prior to picking up the sword again. Mid to late summer is a good time to start tx, I did not like the summer heat while on tx at all.
"ride my motorcycle to nova scotia" it would be a sweet ride, nice winding roads up through Cape Breton, a check see of the Bay of Fundy tides along the way. Good luck in your decision, both in the direction of your ride and your next tx.
Pro

http://www.motorcycletourguidens.com/

[Boobert]

Round 2.....KO!!!

[alb572]

Hi, just another data point for you. I am on week 16 of triple therapy with INC. Started up with HGB of 17.1: the lowest it got was 13.0.

Best of luck with you 2nd round--this time you will be successful.

[uncledudeness]

i just wanted to thank everyone for their comments. it means a lot to know that there is support to help get through this...thanks again....

so it looks like i'll start treatment some time in the summer with incivek. i just hope the anemia is manageable this time......thanks again peeps.

[Idyllic]

Ha ha. I had to read your post a few times. You are very clever. Anyway, given your past I would pretty much prepare to be Anemic within a couple of weeks.

I agree with everything frijole said. Anemia is really down played with the Incivek literature but I am telling you so many of us are. The first time I treated with Peg/Riba my Hgb levels were not really effected yet when I finished the Incivek they were at 10.2.