when to call it a day - 24 week result

[iceboy]

Hello all

How are you all doing. I just got my 24 week (actually 26 week)results today, and Im positive on the quality test. ! Not good news. My story is:
1B -
VL 1,2M start -
4week 4000 -
12 week not detectable on a >600 test -
doses:
180ug pegasys
1000 mg Ribavirin for 2 months
0 mg ribavirin for a month
600 mg for 2 months
400 mg for the last bit
severe anemia
150 ug EPO weekly


Im looking for advice. Do you know of instances where doubling the doses for a month can do anything. I

[vincenos]

geno type 1a thanks for the lead i will try and find it have a great day

[zazza]

Here is a link to get you started:

http://www.medhelp.org/posts/show/456620

It is titled "Stage 2, Grade 2, tx or not 2 tx?"

[zazza]

Which genotype are you? This is very important to know when considering treatment, as the rate of success and the length of treatment is very different depending on genotype. The current success rate for genotype 1 is only 50%, for genotype 2 and 3 between 80-90%.

Whether one should treat or not is a very personal decision and an often discussed issue on this board. There are new drugs coming in perhaps the next 3-5 years which will add effectiveness to the current ones, ribavirin and pegylated interferon. I suggest you follow the discussions on this forum, look in the archives and try to form an opinion on whether to wait for these drugs or not.

Good luck and don't hesitate to post a thread of your own if you want others' input. This is a great place to be, caring people and lots of good medical information. Don't be afraid of treating either, it is doable, although not pleasureable of course.

Zazza

[vincenos]

thanks you have raelly shed some light on it for me  even though i  have not started any tx. yet and actually very scared too and not sure if i need to but being 38 yrs. old w/stage 2 grade 2 and that vl.  maybe i should consider tx a little more ..? your opinion?/?  thanks vince

[zazza]

Viral load can be expressed in either International Units per milliliter or in log form. Log10 form means the viral load number is expressed in "10 to the power of ...". In your case: 10 to the power of 6.262.

It is useful to express viral load in log form because this allows us to better understand the decrease in viral load during treatment.

A decrease of one log means your viral load has decreased by 90%.
A decrease of two logs means your viral load has decreased by 99%.
A decrease of three logs means your viral load has decreased by 99.9%.

This is a much more illustrating measure of what is going on than to look at actual viral copies. So if you are a genotype 1, you want to have at least a 2 log drop by week 12 to continue treatment. In your case that would mean having a viral load at week 12 of no more than 18300 IU/ml.

Your viral load of today, 1'830'000 IU/ml, is a pretty average viral load. Wish you the best.

[vincenos]

maybe some one can help ...on my hep-c blood work it says  quanatitation1,830,000   iu/mL this is a certain blood test for hep c also another # is hvc.--log10 ----------6.262-log10  IU/mL .I DONT UNDERATND .? Can someone give some imput for thanks alot and god bless all vince lange

[edsnail]

   Here in San Francisco, some hepatologists ARE using double doses on peg intron and riboviren on nonrepsonders.  But there are two qualifications.
1: You must have tried and failed at all the other avialoable remeidies.  That means you did three months on regular dose preeg intron + riboviron and were a non responder, then three months on infergen and were also a non responder.
2: You must be able to tolerate resaonably well, both phisicaly and mentaly, the normal dose of beg intron + riboviren.  If you can't handle the singel dose, how could you handle the double dose?
  In my case, that is not currently an option.  I have low platelet count, which is driven lower by nterferon, so they've never been able to give me the full dose of interferon.
  If I am a non responder, they will try me out on infergen if I want to.  What I'm going to ask is: can I keep taking my ribovirens with my infergen to double my odds?
  This is not normaly done, but it is not unprecedented.
If a drug to boost platelet levels, curently in testing, can be optained, I might be able to try the sindle dose, and perhaps even the double dose.  But not now.
   ICeboy, I think this aplies to you, to.  
But it does sound like you can afford to wait.  Lots of good stuff coming down the pike to increase options.  But I'm a stage four, so I can't afford to wait so long.

[beamishboy]

lots of downs & occasional ups...but i'm alrite..how 'bout yu?? back in fla? nearing the finishline,yu must have a small fortune in airmiles...yu  amaze me w/ your ability to carry on w/ such low hgb....I am soo sure you got Svr -onward!!!!!

[Mister beagle bailey]

How are you doing?  Good to see you posting.

BEAGLE

[beamishboy]

Ice-good to see ya post-sorry trx isn't pannin out.....Regroup& wait for less toxic trx??? i am certainly NO expert on your options,but these meds have been kicking yur butt!! i don't know How yu manage to exist w/ such low hgb...You are one tuff ICEMAN-Goodluck & keep in touch brother........
doglover-welcome to the best antidote to depression..this maybe the lifeline that gets yu thru treatment...You sound more than a capable caring man-sooo time to take care of Yourself!..by the by,my dog "honey" has become constant/under my feet companion-she is sooo attentive-everyone says'she knows yur treatin&sick"...either way,a great ally in this battle..GOODLUCK & keep postin

[iceboy]

these drugs have some different side effects on us. Please show respect for that. I take my hat off for you and your 8 ribas a day. Please chew before you swallow. It will last longer. (also just kidding)

[jmjm530]

ICE:  have you done your 3months post and are you a happy bunny.
----------------------------
Negative via sensitive Viral Load tests at six weeks post which gives me a lot of confidence. I'll take the 3-month post test in a week or two. Curious, do you know the sensitivity level of the qualitative test you just took? I'm guessing it's 50 IU/ml or less. All the best and please let us know what you end up doing.

-- Jim

[iceboy]

is Infergen (consensus interferon) just a nother brand of interferon ?

Dog lover. Welcome to the forum. In joy and sorrow - we get through this. Don

[iceboy]

Ill find out the sensitivity. (When I have asked so far I get enourmus eys glearing at me saying "VERY sensitive..."

[jmjm530]

LOL. No biggie and don't go through the trouble for me. Postive is positive even if it's only 1 IU/ml. Just a curiosity thing.

[dog_lover]

On Valentine's Day 2004 my wife and best and really only friend came home and announced she was leaving me for another man.  She was needy and was tired of trying to help me deal with intractable chronic low back pain that kept me on oxycontin and morphine. Shortly after I lost my job of ten years due to continued performance failures due to my back pain and the side-effects of trying to mitigate the pain. Later in 2004 I t-boned a '68 Galaxy with my Honda 1300 XVR, shattering my wrist and causing further damage to my back.  As that wonderful year rolled on I lost my home I had worked so very hard on to make it just perfect and I lost my home I was forced to file bankruptcy.  On two occasions I came very close to killing myself, on one occasion I sat still with a twelve-gauge in my mouth for forty-five minutes unable to pull the trigger while on another occasion I prepared a nice Cyanide cocktail using Potassium Cyanide I had purchased to "deal with some pesky rats."  I lacked the courage to do it.  During this ode to feeling sorry for myself I found out I had hep-c. The reason I bore you with all of this is to try to put things in perspective.  I am fifty-two, I currently live in my sister's home and I want to try to put it all back together again.  I know I'll never find a special lady again, I'm dull, bald and fat. But at least I can still travel and keep my wonderful four-legged friends with me while I live the final third of my life.  I don't want to wait, I want to know if I'm going to get better, I want to know if I can cure this and if not I need to plan some strategies.  Thanks, I have never told anyone this whole story before.
Craig, the Dog Lover

[jmjm530]

I'm glad Mike was able to lend some of his experience and wisdom to the discussion. BTW I didn't mean to infer you were "dull" at all -- just relating what I see out there with other folks in regard to the lady issue.

As Mike says, you're anything but dull, not only with what you've gone through, but in the interesting, introspective, and honest way you express yourself. That's quite unique.

-- Jim

[strator]

Craig - The courage you thought you lacked to 'do it', wouldn't hold a candle to the courage you showed by choosing to live. I never went through what you did, I never accumulated anything to lose, except the inner misery. There was a time I romanced death as preferrable to life the way it was, evevn threatened my doc that I'd go play in traffic if he didn't put me someplace. That's gone now. What I did lose I don't want back. Don't know where I'm going in life but maybe I'll know it when i get there. In the meantime by opening up like you have here, new windows and doors have opened up. Hep c or not, I'm enjoying the journey, it's new. Thought it was over for me when I was on finally my way back into life and got the hep dx, and a stage 1 to 2 bx which I didn't even understand. Then one day a transplant receipient pulled me to the side, looked me in the eye when I said I was scared. He said 'You're gonna be okay. You can do this.' Man I felt humbled, and hopeful. We all have fears. Sometimes I think the fear of coming home in trouble when I was 5 or 6 was just as bad as this adult stuff. We get up, shovel against the tide. Some days we need a bigger shovel. When we're lucky we find a place like this and people help us shovel.
Be Well,
Don

[susan400]

Oh come on, you all are being wimpy.    (This is kidding, so don't get all mad w/me).   Wimpy, wimpy.   What's the big deal with the Ribavirin.  For crying out loud, if I can take 8 a day, then the rest of you could do 4 a day if you had to in a clinical trial.   Wimps!     :)          

Susan

[jmjm530]

All the best, and trust me, the self-injection thing is no biggie in the scope of things. If you can't do it, maybe your sis or a friend can assist.

As you continue you research, just keep in mind that as a stage 2 with severe depression, the option always exists to watch and wait for newer drugs, which potentially will give better odds and a shorter treatment course -- but keep in mind we don't exactly know when the drugs will come to market, although best guess seems 2009 if things pan out. The benefit of waiting is that you  potentinally won't have to treat with inteferon for 48 weeks which is no friend of depression. And maybe in the meanwhile new AD's will come to market.

I suppose the other option is just to go ahead with treatment -- see how it goes -- and then bail out if things get too rough, or if you don't get a quick enough viral response.

I'd still find out -- or have sis find out -- what they want to inject you with making any kind of committment. Good luck and the journal sounds like a great idea!

-- Jim

[dog_lover]

Thanks for the kind words. I have never thrown all that out on the table before, felt kind of good.  Every day I get into this forum I realize what a genuine special place it is.  If I ever win the Powerball I'm going to buy an island, populate it with the members of this forum and consider myself a very lucky fat, bald man.
Baldy (Formally, Dog_lover)

[susan400]

I'm sorry, I didn't mean to offend anyone.  I don't expect everyone to ever be able to do the level of treatment that I've done.  I was actually just trying to say that in my case 4 Riba's seems like a piece of cake compared to what I've been doing.  And I was trying to offer encouragement to those who are struggling with the Riba, but I was trying to do it in a kidding around way.  I guess that I don't do the humor thing very good.
It's probably not funny.

Susan

[iceboy]

Don

[jmjm530]

Dog says: I know I'll never find a special lady again, I'm dull, bald and fat.
-----------------------
I'll let you in on a little secret. It's my "dull, bald, and fat" friends who are all with nice partners right now while I sit here typing alone. LOL.

You obviously have a lot on your plate, and I only question (as did the VA) if you're ready for treatment at this point. As a stage 2 ( I believe) you don't have to make this decision overnight with your extenuating circumstances although it really becomes your call. Not that I'm suggesting that stage 2 folks wait, but many of us here (including myself) didn't start to treat until we hit stage 3 or later for various reasons. Stage 2 in and of itself is NOT a death sentence, even if you don't treat right away.

There's another thread going on above about the VA you might want to keep an eye on.  We also have another one of our members -- Mike Simon -- who had a motorcycle accident just coming off treatment so maybe he can add something to when the **** hits the fan after already hitting the fan.

Thanks for sharing your story with all of us. I sense you have a lot more strength than you imagine. Life has dealt you a lot of tough cards at the same time and yet you're still in there fighting. That talk-therapy group sounds like something good to try regardless of whether you treat or not.

All the best.

-- Jim