Aa
All blood work is back
My blood work came back today and i got all the info i could today from of my nurse. I am genotype 1a stage 1 grade 1
Viral load is 1 million 350 thousand, she says she would for sure have the treatmeants if she were me, that my chances of doing well are really good. So what do you guys think?
Viral load is 1 million 350 thousand, she says she would for sure have the treatmeants if she were me, that my chances of doing well are really good. So what do you guys think?
i have stage 1 hep c i did the trestment and it made my life worse the pain is un bearable the doctores dont belive you i really dont know where my life is going i wish i can find someone who would belive in me and what im saying im getting to tired to fight the fight any more everyday i hurt so bad it fills like some one tock a base ball bat to my body what do i do im giving up hope all i know is i wish i did not do the treatment but we all are not the same and im very happy for those it help but what do we do when it dose not where do we go for help ? please tell me if you know i wish someone would belive in me and and liston thats all i want is some one who cares
You do --- but it will catch on fairly quickly. Just keep reading - and learning. And then go and teach others. That's the best advice I can give you - because the more you teach - the more you learn about it...
And knowing more about it - makes you more knowledgeable. Besides we need more spokespeople to go out and talk about it. It's time to take this Dragon out of the Shadows.
Meki
And knowing more about it - makes you more knowledgeable. Besides we need more spokespeople to go out and talk about it. It's time to take this Dragon out of the Shadows.
Meki
Hi Jody,,,,you are in a great position with minimal damage which is a real plus! Do you know what your alt/ast are? This is something that will take lots of thought and will have to come from your heart because only you will know what is right for yourself. I just know in my case,,,I wanted the virus gone! I didn't want to worry about passing it on to anyone or playing the waiting game and then the older I was,,,,Harder to treat.
I am 1a. In 2002 my Bx showed stage 2. In 2007 I was teetering on stage 4. Hindsight tells me I should have had tx when there was less Liver damage, Maybe I should have had a Bx in 2005. It is your decision. make it and stick to it. All the what ifs and maybes won't change where I am now, One of the reason's I didn't treat was the stories of the horrors of Tx. Yes the tx makes me feel sick, but I have to look at the positive side and see it as a stepping stone to getting better.
Teri
Teri
Jody - either way for you.
I couldn't handle the thought of something in my body eating at me from the inside. It made me ill to think that something was in there just multiplying randomly and destroying me... even if it was a minimal amount...
You could wait - you could treat.
I believe in treating. I've been through it --- one of the hardest things I've ever done in my life - don't know if I had to do it again, if I could force myself to do it again. But I'm glad I made it through.
Life is not easy for you - and I know that you have some other issues going on. I think that this is a decision that you will have to sit down and weigh out the pros and cons for yourself.
Pros:
You'll possibly eliminate the disease from your body
You have currently minimal damage
You are still young - healthy enough to go physically through the TX
You don't have a family dependent on you that you'd have to take care of while you go through TX
Cons:
It's a nasty cure - you could have awful side effects
You don't have a support group (family)
Those are just some examples - but you need to make your own.
Research the web for more places about HCV - and the current clinical trials.
Read up on how long it takes to make FDA approval --- and know this: I don't think there will be a drug on the market for HCV that WON'T have side effects.
It's a matter of --- will you be healthy and young enough to handle the side effects later on?
Can you live with your decision EITHER WAY?
It's not an easy choice - but either way you go - we'll be here. There will be new faces, new people - but some sort of comraderie will be here...
Hugs to you - and know that you have time to think about this... You don't have to decide overnight.
But once you make your decision - either way... Stick to it - and be proud of it.
Meki
I couldn't handle the thought of something in my body eating at me from the inside. It made me ill to think that something was in there just multiplying randomly and destroying me... even if it was a minimal amount...
You could wait - you could treat.
I believe in treating. I've been through it --- one of the hardest things I've ever done in my life - don't know if I had to do it again, if I could force myself to do it again. But I'm glad I made it through.
Life is not easy for you - and I know that you have some other issues going on. I think that this is a decision that you will have to sit down and weigh out the pros and cons for yourself.
Pros:
You'll possibly eliminate the disease from your body
You have currently minimal damage
You are still young - healthy enough to go physically through the TX
You don't have a family dependent on you that you'd have to take care of while you go through TX
Cons:
It's a nasty cure - you could have awful side effects
You don't have a support group (family)
Those are just some examples - but you need to make your own.
Research the web for more places about HCV - and the current clinical trials.
Read up on how long it takes to make FDA approval --- and know this: I don't think there will be a drug on the market for HCV that WON'T have side effects.
It's a matter of --- will you be healthy and young enough to handle the side effects later on?
Can you live with your decision EITHER WAY?
It's not an easy choice - but either way you go - we'll be here. There will be new faces, new people - but some sort of comraderie will be here...
Hugs to you - and know that you have time to think about this... You don't have to decide overnight.
But once you make your decision - either way... Stick to it - and be proud of it.
Meki
JL, no one knows for sure when they got hep c unless they catch it in the acute stage, and even then, how can anyone be 100% sure?
My 2 cents is that you are a stage 1 grade 1, so tx is not absolutely necessary. Tx for geno 1 is long and the side effects can be grueling. Of course not everyone has side effects, but with a 48 week tx course, you have to be ready. With your other health issues that you've spoken about in the past, and the fact that you will be txing with out help, why not wait?? The new drugs are really looking good as far as shortening the tx course. Why start a 48 or even longer (72!) tx when the new drugs are on the horizon? I txed at stage 1 grade 1, but I'm a geno 2. Luckily, I was a rapid responder, so I shortened my tx to 16 weeks. I was still und at 3 months post. If I do relapse and have to tx again, I will wait for the new drugs.
Good luck with your decision, take your time making up your mind. Don't "compulsively" jump into this:)
Bug
My 2 cents is that you are a stage 1 grade 1, so tx is not absolutely necessary. Tx for geno 1 is long and the side effects can be grueling. Of course not everyone has side effects, but with a 48 week tx course, you have to be ready. With your other health issues that you've spoken about in the past, and the fact that you will be txing with out help, why not wait?? The new drugs are really looking good as far as shortening the tx course. Why start a 48 or even longer (72!) tx when the new drugs are on the horizon? I txed at stage 1 grade 1, but I'm a geno 2. Luckily, I was a rapid responder, so I shortened my tx to 16 weeks. I was still und at 3 months post. If I do relapse and have to tx again, I will wait for the new drugs.
Good luck with your decision, take your time making up your mind. Don't "compulsively" jump into this:)
Bug
its kinda crazy allabout this ,, but GOD is are physician, trust in him... Iam a mom also and iam scared to tx but iam gonna shoot for it and beat its a--....... and let GOD make me better by trusting in him... I pray for everyone.. just think positive
Im 49 no kids, divorced so if i do this its just for me. They think ive had it 25 or 30 years.....but how do they know i didnt get it 2 years ago...ya know.
Hi, I am in an albuferon clinical trial that is having really good results with geno 1s, 75-80% SVR. I am geno 2b and my liver enzymes were normal by week 2, (don't know about the 1s but I think they expect clearance by week 6)! I have stage 1, almost 2, damage also. I was asymptomatic before treatment too, but the opportunity came up to particpate in this study and they needed patients that were naive to treatment, so I went for it and am happy I did. If I didn't have the opportunity for the study I would have waited on the new drugs, instead I started researching clinical trials until I found a good one that I could enter. The only bummer about the trial is its blind, so we don't get to see what our viral load is, but liver enzymes normalizing is a great sign that its down. I had a load of 1,300,000 to 2,000,000, which is pretty low, at the start of the trial.
I only have to give myself the shot every other week and I have NO SYMPTOMS after the shot. At week six I am starting to have good days, the Riba really kicked my butt, but I am getting used to that too. This drug comes out in 2010, it is in phase 3 now. If I were you Jody, I'd wait until the new stuff came out, because quality of life is so much better only having to do the shot every other week. And if you are lucky, they may find something better than Riba by then, I hate the stuff!
Anemia is a bummer to deal with and almost everyone seems to get it from the riba, or at least lots of people do. If it weren't for the anemia I'd probably feel great!
I only have to give myself the shot every other week and I have NO SYMPTOMS after the shot. At week six I am starting to have good days, the Riba really kicked my butt, but I am getting used to that too. This drug comes out in 2010, it is in phase 3 now. If I were you Jody, I'd wait until the new stuff came out, because quality of life is so much better only having to do the shot every other week. And if you are lucky, they may find something better than Riba by then, I hate the stuff!
Anemia is a bummer to deal with and almost everyone seems to get it from the riba, or at least lots of people do. If it weren't for the anemia I'd probably feel great!
Thanks . Im 2/2 and planning on tx in December, My VL is 7mil. 1a.
Just hope Im making the right decision. TIme will tell.
Your opinion is much appreciated!
Its a very confusing situation for all.
Just hope Im making the right decision. TIme will tell.
Your opinion is much appreciated!
Its a very confusing situation for all.
Congrats on your mininmal liver damage...Thats good! Wish you good luck on whatever decision you make. I know its a tough one!!
Oops read the VL as copies not IUs.
The VL would probably need to be <400K to do the short course.
I do like the idea of the 4 or 12 week stop rule though.
It would give you a much better chance the second time round.
Would have to be better than booking yourself in for 72 weeks as well.
I agree that it would be hard to stop as we tend to be in fight mode when on Tx.
CS
The VL would probably need to be <400K to do the short course.
I do like the idea of the 4 or 12 week stop rule though.
It would give you a much better chance the second time round.
Would have to be better than booking yourself in for 72 weeks as well.
I agree that it would be hard to stop as we tend to be in fight mode when on Tx.
CS
Slow Friday I guess and not too many people have chimed in on your situation. But from past threads of this sort, it generally runs around 50-50 in terms of whether someone like yourself should treat now, in fact probably the majority here would think you should, but of course keep in mind that the folks here have in most cases already made a decision to treat therefore may have some bias. I don't think anyone would argue, however, that you do have choices and you do have the time to think about those choices.
All the best,
-- Jim
All the best,
-- Jim
Darn now i dont know what to do again lol. Thank yall so much for all your help....dont know what id do without this place, makes me feel better and not be as scared. (smile) Before i found this site i was a crazy person with all of this on my mind. I come here everyday and read, still have alot to learn, but im doing my best. I am thankful for all of you here.
I am one that decided to treat and did qualify as RVR. I had no liver damage . I did 36 weeks of 48. I am glad I treated. There are alot of thing that factor into treatment and response. For me, being a mother of 2 small children, i was sooooo afraid of them getting ahold of my toothbrush, or whatever and passing it to them. All i wanted was the disease out of my body, NOW!!!!! When I found out I had hep c, i was devestaed and not to mention uninsured. I had to FIGHT to get the medicine, iin no way wanted any part of waiting for tx. However, i had little knowledge about all of the studies that suggest that shorter treatment can be possible for RVR's. I would make sure you learn AS MUCH as possible and make the deceision that is RIGHT FOR YOU. You will have a peace that surpasses all understanding and that will be how you know its the RIGHT deceision.
GOOD LUCK!!!
RESEARCH, RESEARCH, RESEARCH!!!!!!!!
GOOD LUCK!!!
RESEARCH, RESEARCH, RESEARCH!!!!!!!!
Tulips,
Yes, your points are good, and that is why I answered in a general sense. As to what point would *I* treat, I best way to answer this is to tell you when I actually treated.
I treated three years after I thought my doctor told me I was between stage 3 and 4 (I was actually stage 3 but that wasn't made clear to me.)
Am I suggesting everyone wait that long? H*ll no. I pushed it to the very limit, for a number of reasons (an acute flare pushed it off a year or so) but the primary reason was what I had heard about interferon treatment.
Would I have treated earlier if newer/shorter/less toxic treatments were hypothetically available at that time? I'm sure I would have taken that into serious consideration.
-- Jim
Yes, your points are good, and that is why I answered in a general sense. As to what point would *I* treat, I best way to answer this is to tell you when I actually treated.
I treated three years after I thought my doctor told me I was between stage 3 and 4 (I was actually stage 3 but that wasn't made clear to me.)
Am I suggesting everyone wait that long? H*ll no. I pushed it to the very limit, for a number of reasons (an acute flare pushed it off a year or so) but the primary reason was what I had heard about interferon treatment.
Would I have treated earlier if newer/shorter/less toxic treatments were hypothetically available at that time? I'm sure I would have taken that into serious consideration.
-- Jim
I think her VL would have to be <600,000 IU/ml to qualify for the shorter course, at least according to the European Union Protocol from last year. And, yes, she would have to be non-detectible by week 4, which would be less than 50/50 I think.
But as long as you bring this up, one reasonable strategy for those geno 1's with qualifying viral loads, is to impose a 4-week stop rule. In other words, if non-detectible by week 4, then continue on to 24 weeks. If detectible at week 4, then stop treatment. Problem is that unless the setting is controlled (like the Vertex trials where I believe they do use a similar 4-week stop rule) -- or unless they had a doctor very much onboard -- most people would find it hard to stop at week 4, especially if they had some sort of response. Just too much prepartation -- physical and mental -- that go into beginning treatment and making the decision to start. In any event, and this again is my personal take for me, if I were a stage 1, not sure I'd even want to treat for 24 weeks with 80% odds, but might want to wait a few years to see what the newer treatments bring.
-- Jim
But as long as you bring this up, one reasonable strategy for those geno 1's with qualifying viral loads, is to impose a 4-week stop rule. In other words, if non-detectible by week 4, then continue on to 24 weeks. If detectible at week 4, then stop treatment. Problem is that unless the setting is controlled (like the Vertex trials where I believe they do use a similar 4-week stop rule) -- or unless they had a doctor very much onboard -- most people would find it hard to stop at week 4, especially if they had some sort of response. Just too much prepartation -- physical and mental -- that go into beginning treatment and making the decision to start. In any event, and this again is my personal take for me, if I were a stage 1, not sure I'd even want to treat for 24 weeks with 80% odds, but might want to wait a few years to see what the newer treatments bring.
-- Jim
AT what point would you treat? Im aware this is just your opinion. Ive heard after 50 , and being in menopause progression is faster. I know whether to tx is a personal decision but would like to hear your opinion...when would you treat? Not easy living with it and not treating I find it to be a monkey on your back.
Thanks for your knowledge & opinion!
Thanks for your knowledge & opinion!
With JodyLynn's VL and liver damage, if she were to RVR wouldnt that give her similar odds. Even with 24 weeks.
Cause Jody would have to RVR first.
CS
Cause Jody would have to RVR first.
CS
Should have added an appropriate/sensible aerobic exercise program preferably combined with some resistance training plus a good nutritional program, possibly including supplements approved by your liver specialist. Do not take any vitamins or supplements with iron in them unless your doctor tells you to and has a good reason.
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