Hepatitis C Support Group
Hepatitis C is a blood-borne viral disease which can cause liver inflammation, fibrosis, cirrhosis and liver cancer. The hepatitis C virus (HCV) is spread by blood-to-blood contact with an infected person's blood. Many people with HCV infection have no symptoms and are unaware of the need to seek treatment. Hepatitis C infects an estimated 150-200 million people worldwide.
Hail brave dragon fighters!
I was told in March that I was 1-2-3 [Type 1; Class? 2; Stage 3 liver disease]. After 6 mos of interferon/ribi, still not undie. Rats!
Now they want to start me on infergen. That trusted reporter, Tatman, told us that infergen is even more attention getting than good old interferon and harder to deal with.
If I take it, I'll be even sicker for another year or more - with only a 20% chance that it will work. But still a chance ...
If I refuse it, I can live each day like it's my last for the 10 yrs or so I have left.
What do you guys think? I appreciate your wisdom born of experience.
I was told in March that I was 1-2-3 [Type 1; Class? 2; Stage 3 liver disease]. After 6 mos of interferon/ribi, still not undie. Rats!
Now they want to start me on infergen. That trusted reporter, Tatman, told us that infergen is even more attention getting than good old interferon and harder to deal with.
If I take it, I'll be even sicker for another year or more - with only a 20% chance that it will work. But still a chance ...
If I refuse it, I can live each day like it's my last for the 10 yrs or so I have left.
What do you guys think? I appreciate your wisdom born of experience.
We can all do this -- whether non-responding or grabbing the gold ring of UND. It's just life after all right???
I kicked it w/infergen-rivab ( after 2 UNsucessful rounds with other combos). 1st rd was in 1992--then tried peg combo 2008--no response and decided to try the daily infergen/riba route (48 wks worth) AND IT WORKED!!!
BEEN FIGHTING THIS MONSTER FOR 24 YEARS! MY VIRAL LOAD REMAINS UNDECTABLE AFTER 1 YEAR OF FINishing meds. PCR dropped to null after 4 months of trying infergen route.
Hang in there!
DO IT--I was a non responder 2x and the infergen/riba worked (48 wks worth).still clear after 13 months. Sides? similar to peg/riba but maybe little worse, however it comes so gradually that I didn't really comprehend how bad the sides were till about 3 months post tx! Looking back-just being sick (flu, colds etc) feel pretty damn good now! :)
So if I were in your shoes, I would do it, you just might beat this thing after all.
Good luck to you, and please stick around for support, this will help you go through it along friend, and family.
Love & Respect,
Mckenzie
one day at the time.
Fingers--you need some tough love here.TURN YOUR HAT AROUND
"When i think about how I will actually react to have dr say tx isn't working"
Wouldn't it be a pisser if Dr says tx IS WORKING?
think bout how U might react to that!!!
First, THANK YOU all for taking my question seriously. Your advice really helped.
Now, the bottom line. I decided not to go the Infergen route when the dr told me that the success rate for Type 1's is a mere 12%. Not enough of a chance at payoff to give up a year of the youngest I'll ever be to add a few years in my dotage. Will go on the new drug in the FDA approval pipeline in ~= 18months. Dr said my liver wouldn't deteriorate much till then. He sez there's a 40% success rate with the new drug for Type 1.
In the mean time, he agreed to let me have one more month of Interferon [suddenly it looks so good!] Here's my reasoning and he bought it: The 20,000 IU Procrit pkgs come with an electronic indicator of whether or not the meds have been frozen. I decided to throw it into my road trip Interferon pkg and damn if it didn't come up frozen. I think i have had 4-8 wks of temperature-compromised meds. They deliver the meds with a sheet of foam between the drugs and the freezer packs, but never tell you that if you travel, you need to use the foam sheet. [I was sandwiching the Pegasys carton between two freezer packs.]
So if I come up UNDIE at Month 7, I'll continue on the Interferon for another 12 months. My current theme song is 'I'm Undectable' sung to the tune of "You're Unbelievable." But I'm not UND - Dec viral load was 400 down from 1100 the month before.
What a long strange trip this has been!
Big hugs to all. Keep fighting the good fight!
if i had that chance i would definitely go for it. i've done over a year of tx, responded to it too then relapsed immediately. they wont let me go on the infergen cos my body isnt up to it. i even though they said i only had one chance, depending on results of battery of tests to see if my body can stand another year plus, i may be able to do the same tx again, but for longer next time. it will be for a minimum of 76 wks and at the end i stay on interferon at lower dose permanently. clinical trials are also a possibility. it's a gamble but they tell me that at this stage anything is a gamble, but i am prepared to try anything to crush this beast.
whatever decision you make will be the right decision for you.
stay strong, be positive and try to keep smiling my friend cos it all helps towards a good outcome.
take care and good luck with your decision making, but please keep us informed:)
xx