
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.

deleted_user
My nurse and Doctor asked if I wanted to join a study. I'm a newbie here and have never gone through treatment. Hmmm...I need your thoughts and opinions on this please.Keep in mind I am a type 1 and doc's say I have minimal damge level 1 or 2 to my liver.
This study will not hold me back from starting treatment on April 9th. It involves 6 groups. It depends on how quickly you respond to the meds on where they place you in the groups.Yhere are no placebo's involved in this study.
If you are a slow responder (don't show negative until week 12 test or the decrease in the amount of the virus in your blood is very slow) you will stay on the treatment for either 48 or 72 weeks.(groups A and B)
If you are a quick responder (show negative at week 8)you will be on treatment for either 32 or 48 weeks.(bgoups C and D)
If you are an extremely quick responder (show negative at week 4) you will be on treatment for either 24 or 48 weeks.(groups E and F)
What do you think I should do? Be part of this study or not be part of this study and why?
Does anybody know the stats on people with type 1 who responded early and then did not complete the full 48 week treatment for some reason. Did they relapse later down the road because of stoping treatment early? I feel this information would be very benificial in making my desision.
PLEASE NOTE...If I am in the study I will get the highest amount of RBV (1400mg daily)
If I'm not in the study I can only get 1200mg daily. It is thought that the higher dose of RBV may increase how well the treatment works in patients who weigh more than 85kgs. I weigh 90kgs.
Thanking you in advance for any info or opinion you have regaring the above matter.
Kind regards,
ScaredRabbit
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This study will not hold me back from starting treatment on April 9th. It involves 6 groups. It depends on how quickly you respond to the meds on where they place you in the groups.Yhere are no placebo's involved in this study.
If you are a slow responder (don't show negative until week 12 test or the decrease in the amount of the virus in your blood is very slow) you will stay on the treatment for either 48 or 72 weeks.(groups A and B)
If you are a quick responder (show negative at week 8)you will be on treatment for either 32 or 48 weeks.(bgoups C and D)
If you are an extremely quick responder (show negative at week 4) you will be on treatment for either 24 or 48 weeks.(groups E and F)
What do you think I should do? Be part of this study or not be part of this study and why?
Does anybody know the stats on people with type 1 who responded early and then did not complete the full 48 week treatment for some reason. Did they relapse later down the road because of stoping treatment early? I feel this information would be very benificial in making my desision.
PLEASE NOTE...If I am in the study I will get the highest amount of RBV (1400mg daily)
If I'm not in the study I can only get 1200mg daily. It is thought that the higher dose of RBV may increase how well the treatment works in patients who weigh more than 85kgs. I weigh 90kgs.
Thanking you in advance for any info or opinion you have regaring the above matter.
Kind regards,
ScaredRabbit
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This is a dilemma that only you and your husband can decide. Should you relapse after 24 weeks on the study, what then? Would you be angry or simply do tx again?
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very helpful around the house. They do alot of cooking and cleaning etc.
Bless their little hearts!
My husband thinks Hmmmmm actuall he's till thinking.
There is so much to take into considersation. Extra traveling (we are 3 hours away from the specialist doctors and nurses.)Extra bucks for traveling is also a concern. Time you have to give up to be involved in the study is another thing.What about if I want to quit the study at 24 weeks if I didn't want to be cut of the meds and decided I wanted the regualr 48 week treatment(that is if I was placed in that very quick responder group that just gets treated for 24 weeks) WELL....I did find out from my nurse just now that I could just quit the study at that point and switch to a 48 week treatment so that is a good thing.
I've got up until April 9 to make my dission so I guess I/we (my husbands thoughts are very important of course)will just tink this all out to the best of our ability. I'm going to take into considerstion all feedback I gain from DS as your opinion and expierence is important to me as well!
I think Tatt is right with the ask, ask, ask...point
and I have been bombarding my nurse with tons of questions. I think you probably all see I'm one of those kind of gals who just keeps on asking(big smiles) thats how ya find things out in my opinion.
right now I'm comfortable with doing treatment for as long as nessasary to cure this stupid hep c that has came into my life and turned it upside down...but after being on treatment especially if I suffer from bad side effect that opinion might change.
Anyways I do want to thank you all for responding. I appreciate it very very much. Hope your all doing o.k. today
Big Hugs,
Scaredrabbit
Hmmmmmm
Ask ask ask, great advice! It's your life! Don't let them forget it!
Take Care,
5starr
P.S. I weigh more then 90kgs-no one told me I had to lose weight. I am on 1200mg Ribi and .5 peg-interferon. VRL 245ML Genotype 2.
Beth
And about the weight issue and the RBV, I started out weighing about 208 pounds (or 94.5 kg using Makiah's conversion formula) I take 1200 mg or RBV daily and my weekly treatment of pegasyst. I am geno-type 1b (the most stubborn of all) and I cleared the virus in just 3 weeks! 22 weeks later I have lost 28 pounds (12.72 kg) so I now weigh 180 lbs (81.8 kg) and I'm only half way done so I will be losing more weight. So I guess doing the longer treatment works out because you will lose the weight as you go and how and be in the 1200 RBV category if you think about it. And yes I cleared in 3 weeks, and I could quit right now but there is no way I want to quit after going this far just to risk to have to do it again. I want to go all of the way through and give myself the best chance I can of beating this thing -the best proven chance that is- not only for myself but for my kids as well. If you risk relapse you hurt your chances of beating this thing, and you really have to think if that's worth the risk for you and your children. At least being a fellow mom with kids at home and being on the actual treatment right now, that is my thoughts and how this treatment has made me focus. I even had the chance to put off treatment since I have no liver damage but I didn't want to, I wanted to go after this thing while I had my best chance of beating it regardless nowing it would be a struggle with my kids being so young. I want to see my kids grow up, see them get married, I want to see my grandbabies born. If I were older and had already been through all of this with my children, than yah I would do the study, but I got this thing young and gonna beat it young so my kids have their mommy for a very long time. Is that something you really want to mess risking with? Just a thought.
I don't envy your decision because before I started treatment, if I'd been asked this question, I probably would have been as confused what to do as you. Let's face it you won't know how YOU will feel on treatment until you start because everyone feels different. Much love and luck to you, sweetie!
I did want to mention my girls ages 17, 14 and 11. My job of taking care of them has gotten much easier over the last few years. They are great kids who are doing real well in school and have great friends. Not in drinking or partying (how I lucked out on this is beyond me...but I sure am grateful)
My hubby is only 41 and is in great health...he's a super guy who will do laundry,cook,clean whatever! I worked away from home a fair bit over the past few years and everyone had to pull together while i was out of town so they are used to being a team and getting whatever needs to be done done....YA I'M ONE HECK OF A LUCKY WOMAN....I KNOW!
Anyways one thing I know forsure is I'm not going to have to worry about doing alot of work if I get real bad side effects. My family will take care of me and the house! I am so fortunate.
The one reason I'm thinking about doing this study is that here in Alberta Canada the Blue Cross Insurance company will only pay for your treatment with these meds once. If you are a non responder you will have to pay yourself nextime if you want to try again. If I go on this study it will give me the opertunity two do the treatment twice without paying...I'm worried about relapsing and haing to pay for the second round of treatment which is like 30,000.oo dollars (OUCH) If I relapsed after being on the study I would be allowed to do a 48 week treatment session at no charge....hmmm