Genotype 2b - Grade 3, Stage 4 Cirrhosis

[patti1957]

i was just diagnosed and am clueless - i must have contracted in my late teens, i am 50 so i have been infected for about 30-32 years.  my first gastro said it was not work going thru the  hepc therapy but i got a 2nd opinion from a gastro that specializes in liver disease - he recommend pegasys & ribavirin - does this sound kosher?  i have a really bad insurance co (i am not working due to back pain and am seeking SSD) they don't cover the meds - does anyone have any advise on how to get them at a reasonable price - i am told i have a good chance of beating the hep c because of the genotype - VL 1,560,000 - if the cost is outrageous, is it worth it - will it extend my the life of my liver if i do the treatment? how long can my liver hold on before i start feeling very sick?

also, due to my back problems for 15 years, i have been taking alot of vicodin over the years - did this do me further harm?  in between the vicodin therapies, i took alot of aspirin - did this do my liver further harm too? (thankfully, i was never a drinker)

i know - alot of questions - i am alone and need info (my doctor is not very imformative but i guess i am lucky to see him being that my insurance is cut rate)

thanks for any advise -

[cba51]

Dear Patti1957

Below I have attempted to answer some of your questions and concerns. I have pasted in your questions followed by brief comment.

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i was just diagnosed and am clueless

We've all been shocked, clueless and bewildered at the time we were diagnosed. The first step is to begin your education. This website is a good place to start.

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he recommend pegasys & ribavirin - does this sound kosher?

These are the 2 medications that are considered SOC or standard order of care.

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i have a really bad insurance co (i am not working due to back pain and am seeking SSD) they don't cover the meds - does anyone have any advise on how to get them at a reasonable price

the drug companies will often provide meds when insurance co's don't. You might also check out clinicaltrials.gov. I just finished 48 weeks on a clinical trial. All drugs, lab work, etc are covered.
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if the cost is outrageous, is it worth it -

Again with some research you should be able to find assistance of one kind or another. If you are truly Stage 4 Grade 3 ( I was) then you really need to treat soon. Don't panic as many can continue for an undetermined time with this amount of liver damage. However you would be considered at an advanced stage of the disease and would want to treat before your liver decompensates ie, begins to not function.

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will it extend my the life of my liver if i do the treatment?

Most people experience improved liver function as a result of treatment. In the very least you are buying some time
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how long can my liver hold on before i start feeling very sick?

No definitive answer can be provided. Each individual case is unique.
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also, due to my back problems for 15 years, i have been taking alot of vicodin over the years - did this do me further harm?  

ask your GI/Hepatologist about this.
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Again read this forum and you will be provided w/good infoBest wishes as you embark on this journey.

Big Al

[patti1957]

thanks big al - the info is helpful - i am learning more by the minute >;o)

[oyasin]

Hi,
I am not a Dr....  That said, I'm also 2b. My understanding is that 2b is the hardest to get rid of. They told me I had a 60% chance of clearing. After my own research, I'd say more like 50%. BUT,,, 50% are good odds, don't ya think? A VL of 1.5m is fairly low and a much better place to start than I did (4.4m).

Go with the second opinion GI. He/she sounds smarter. I can't speak to Pegasys, but a PegIntron rep told me if money was a problem to speak up "we will work with you, we want you to get medication"

I have OK insurance, I guess. If ANY ins co. can be good. Mail order meds were $2800. a month to Anthem, and $105. co-pay to me.  Peg Intron 180's & Ribavirin 1000mg.

My feeling is any narcotic is bad for your liver. Read the precautions for Vicodin re liver damage.

You'll learn alot on this site. keep us posted
be well
David

[Wassup]

Hi Patti, Yes, what Big Al said.  Also, try to find the acronym list,, SOMEONE PLEASE DIAL PATTI IN WITH WHERE TO FIND THIS, I sure helps to have some idea what all the initials mean. Also, try not to be overwhelmed.  Many people here have been dealing with Hep. for years and years. Although you'll probably be totally confused, just keep reading with an acronym list in hand and before you know it, you'll start to really understand more than you could imagine.  Also, be sure to state your concerns, or ask others about how to deal with sx, (side effects), of tx,(treatments), etc. We are all here for you, and one another. You've definitely found the place to go for; info. support,and help, by a bunch of, (what I lovingly refer to as) 'my Cootie Pals'! Many Hugs, Ant B

[oyasin]

regarding my previous post... I'm 1b, not 2b. sorry bout that.  A very good example of sx of tx though, huh? Acronym for brain fog here is "brain fog" ha!  D.

[patti1957]

thanks for the info - when oyasin said 2b was the hardest to get rid of i was aghast - but thanks oyasin for the correction ans waasup = thanks for the info

dealing with my drs office seems to be the difficulty now - my ins denied the meds and i am now waitng to hear from the dr office as to my next step - they apparently know where i can get the meds for alot less but it's like an act of congress to get them to address my questions or get back to me - like i said, i at least feel VERY LUCKY this doc is in my ins plan - he seems to give me hope

thanks folks - you da best - i'll be seeing you around

[sldb]

1a, stage 4, extended tx 96wks. SVR now. treat as soon as you are able, it is possible to clear the virus with stage 4 liver cirrhosis. Good Luck and best wishes on your treatment.

[Bill1954]

Genotype 2 is the genotype *most* responsive to treatment; you would typically be expected to treat for 24 weeks with a 80 to 90% chance of Sustained Viral Response (SVR); vs genotype 1 that undergoes 48 to 72+ weeks of treament with a 40-45% response rate.

The following manufactures for HCV medications will provide no or low cost medications to patients who qualify; Give them a call, and get the application process started. It generally takes 10-14 days for approval. You do not need your doctor to help sign on, but you will need him/her to verify your prescription at some point. These folks are on top of their business, and they ROCK!

Pegasys system (Roche): 1 [phone]

PEG-intron system (Schering-Plough) 1 [phone]

Good luck, and stay in touch—

Bill

[sldb]

Forgot to tell you at our stage of cirrhosis stay away from the asprin and vicodin.  Vicodin contains tylenol which will further damage your liver. Try 1000mg vitC and 400iu vitE a day to start. also there is a post with Gauf's liver supplement list you might want to take a look at.

[Bill1954]

The following list of acronyms was provided by CockSparrow (thanks), and might help you navigate some of our conversations:
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HCV Acronyms


HCV Hepatitis C Virus
CHC Chronic Hepatitis C
AHC Acute Hepatitis C
G or GT Genotype
GI Gastroenterologist
SOC Standard of Care
ITT Intent to Treat
Tx Treatment, Therapy (can also mean Transplant)
Bx Biopsy
Dx Diagnosis
Sx Symptoms/Side Effects
Rx Prescription
Hx History
RVR Rapid Virological Response (4 Week PCR - UND
EVR Early Virological Response (12 Week PCR - UND or >2 Log Drop)
EOT End of Treatment
SVR Sustained Virological Response (UND 6 Months post TX end)
PCR Polymerase Chain Reaction
RT-PCR Reverse Transcription-Polymerase Chain Reaction.
TMA Transcription Mediated Amplification
BMI Body Mass Index
WHR Waist to Hip Ratio
VL Viral Load
HVL High Viral Load
LVL Low Viral Load
UND Undetectable Viral Load

Drug Acronyms
IFN Interferon (Alpha 2a / Alpha 2b)
NPIA Non-Pegylated Interferon Alpha
PegIFN Pegylated Interferon (Alpha 2a / Alpha 2b)
CIFN Consensus Interferon (Infergen/alphacon)