Aa
To treat now or wait
I was diagnosed with HVC type-1a, liver enzymes normal and viral load 207,000 (I posted earlier and said my VL was 72,000 I apologize for the wrong info I was new to learning all of this stuff and just got the numbers wrong) anyway today I went to the GI and got the results of my biopsy and it was grade 0 stage 0. My Dr. says it’s my choice to treat now or wait. He recommends waiting but will do what I want. That’s were my question is…should I treat now or wait. I’ve read a lot about this disease and wouldn’t I stand a better chance of clearing it now while my VL is low and I don’t have damage to my liver? Or should I wait for the new drugs (a year or two or three) that give better odds to type-1 and run the chance of VL increasing, damage being done to my liver, and wishing I had treated when I first found out. I’m the type that when something needs to be done I’m ready to start yesterday, so wait and see doesn’t come easily for me. I’ve been reading the posts on this forum for a couple of months now and everyone seems very knowledgeable in HCV and very thoughtful with their advice. If it were you… would you treat now or would you wait? Thanks in advance.
Annie
Annie
First I would like to thank everyone who has expressed his or her opinions. I do know this is a very personal choice, but I could ask family & myself until I’m blue in the face but the fact is until you’ve been there you don’t understand. That is why I posed the question to you guys; you’re either there or have already been on this journey. Someone asked about my history. To be honest I’m not sure, I do know that there have been 3 times that I could say are high risk. First in 1978 I had a blood transfusion, in the early 80’s I had minor surgery and because of my blood not clotting I was given something to help it clot and am now lead to understand that could of put me at risk and about 16 yrs ago I got a tattoo. That’s all I know of. My GI says with a low VL and 0/0 liver with no enzymes it looks as though I got this virus more recently than 30,25, or even 16 yrs ago. That’s a scary thought cause I can’t remember any blood to blood contact so how many people could I have unknowingly infected. I’ve also wondered if I’ve had this for 30 yrs and have a low VL with no liver damage maybe my body has been doing a somewhat good job at fighting this and maybe it just needs a little help over the hump. Am I in lala land to think that? As far as working while tx, I am very lucky to work for my husband no worries about being fired (I already tried he won’t fire me) I guess free labor is hard to find lol. I also work in front of a computer so the work isn’t strenuous. Thanks again for all the input, like I said in a earlier post, right now I’m gathering info for the decision I will make May 1st.
Annie
Annie
This is from Clinical Care site:
"Swain and coworkers evaluated 997 patients who achieved an SVR in trials that included treatment with peginterferon alfa-2a with or without ribavirin.[1] Patients were tested yearly by use of the Roche COBAS AMPLICOR HCV test v 2.0, with a reported sensitivity of 50 IU/mL. Over a median of 4.1 years of follow-up, only 8 individuals (0.8%) had evidence of recurrent infection. Although the details of this study have not yet been published outside of a conference presentation, the results are a welcome support for the body of data indicating that SVR is indeed equivalent to cure for most patients."
See: http://tiny.cc/odlSB
"Swain and coworkers evaluated 997 patients who achieved an SVR in trials that included treatment with peginterferon alfa-2a with or without ribavirin.[1] Patients were tested yearly by use of the Roche COBAS AMPLICOR HCV test v 2.0, with a reported sensitivity of 50 IU/mL. Over a median of 4.1 years of follow-up, only 8 individuals (0.8%) had evidence of recurrent infection. Although the details of this study have not yet been published outside of a conference presentation, the results are a welcome support for the body of data indicating that SVR is indeed equivalent to cure for most patients."
See: http://tiny.cc/odlSB
Not sure if I understood your question correctly. But my understanding is that when we say that the chances of success for geno 1's are 50%, what we mean is that there's a 50% chance of ending up SVR. SVR is defined as being UND six months after you stop taking the treatment drugs, and SVR has shown to be very durable in studies going out over 10 years. If you relapse, you are not SVR.
-- Jim
-- Jim
I think a careful read would show that the posts by both you and NYGirl appeared to favor treatment (the bulk of your post talked about tx options) although technically both of advised to "make your own decision". BTW I also stated that this "is a personal decision with many factors to consider" i.e. make your own decision, but I don't think anyone would argue that the bulk of my post was to watch and wait. In any event, thanks for the running tally, because in the end, Annie should no doubt go with the majority since we don't have a caucus sytem in place. Hopefully you agree.
-- Jim
-- Jim
You were the 6th person to respond.
1) Fretboard advised "don't treat"
2) Xenigma advised "treat"
3) Mikesimon advised "make you own decision"
4) Goldenrule advised "treat"
5) NyGirl advise "make your own decision"
That's 2 "treat" and 1 "don't treat" and 2 "make your own decision". It was a tie before you posted between "treat" and "make your own decision" with "don't treat" trailing behind with only one vote. Now that you've posted it's a three way tie. Thanks for evening things up.
Mike
1) Fretboard advised "don't treat"
2) Xenigma advised "treat"
3) Mikesimon advised "make you own decision"
4) Goldenrule advised "treat"
5) NyGirl advise "make your own decision"
That's 2 "treat" and 1 "don't treat" and 2 "make your own decision". It was a tie before you posted between "treat" and "make your own decision" with "don't treat" trailing behind with only one vote. Now that you've posted it's a three way tie. Thanks for evening things up.
Mike
-- genotype 1 -- which means that right now you have around a 50-50 chance of success with treatment if you treat for 48 weeks.
I told my doctor about all of the relapsers that are on this forum. That some are treating for their 3rd time etc. The doctor told me that the "50-50" success rate includes everyone that has relapsed. Basically, if you reach UND and SVR you are automatically counted in the 50%. Many of which relapse latter on. I wonder what the real percetage is of people that remain UND for more than 3 yrs?
Any info?
TV
I told my doctor about all of the relapsers that are on this forum. That some are treating for their 3rd time etc. The doctor told me that the "50-50" success rate includes everyone that has relapsed. Basically, if you reach UND and SVR you are automatically counted in the 50%. Many of which relapse latter on. I wonder what the real percetage is of people that remain UND for more than 3 yrs?
Any info?
TV
I said in my previous post: Just keep in mind that most of the people on sites like ours have either treated, are treating, or are seriously considering treatment and opinions expressed are no doubt influenced by that.
----------------------------------------------------
While the above is accurate, what I meant to say is that you will not surprisingly tend to find a pro-treatment bias on forums where the majority of people are treating or have treated. For example, you would more likely hear from a geno 1 with little or no liver damage who made the decision to treat than one who decided to wait. My guess is that many geno 1's with little or no liver damage who decide not to treat aren't as active in these types of discusson groups. Personally I never posted in ones of these groups until I made the decision to treat. Prior to that, other than periodic doctor visits, I rarely even thought about Hep C.
-- Jim
----------------------------------------------------
While the above is accurate, what I meant to say is that you will not surprisingly tend to find a pro-treatment bias on forums where the majority of people are treating or have treated. For example, you would more likely hear from a geno 1 with little or no liver damage who made the decision to treat than one who decided to wait. My guess is that many geno 1's with little or no liver damage who decide not to treat aren't as active in these types of discusson groups. Personally I never posted in ones of these groups until I made the decision to treat. Prior to that, other than periodic doctor visits, I rarely even thought about Hep C.
-- Jim
Hi Annie,
As already mentioned, in the end, treating or not treating becomes a very personal decision with many factors to consider. Some medical and some not.
From a quick read of the above posts, it seems that the majority of posters are recommending treatment.
We've had numerous threads like this before, and I'd venture to say that in a majority of those past threads, the sentiment was toward not treating for a genotype1 with no liver damage. At least that is my recollection.
So, in a sense, the sentiment in any one given thread depends on who showed up that day to post. You might therefore want to search the archives for similar threads to give yourself the advantage of an even more diverse input.
In fact, spending a weekend -- not just an hour or so -- back reading posts here, will give you a much better take on many of the issues you might face treating or not treating.
As to my opinion, and it has to be very general since I only know a snippet of your history -- I would strongly recommend you do not treat now and go into what is called a "watch and wait" mode.
A number of reasons for this. First, you have the hardest to treat genotype -- genotype 1 -- which means that right now you have around a 50-50 chance of success with treatment if you treat for 48 weeks. You should know that there is already a drug in trial -- Telaprevir -- that is showing slightly better cure rates -- around 60% -- but with only 24 weeks of treatment.
As someone who has treated (I treated when told I was between stage 3 and 4) I can't tell you how much of a life-impacting diffference 24 weeks might make, instead of 48 -- at least in my case.
Also, beyond treatment, many here have reported post treatment side effects from the treatment drugs. Another reason to favor a 24 versus 48 week treatment. And keep in mind, that down the road -- perhaps 7-10 years -- treatments may even be shorter than 24 weeks for geno 1's, and they may not even use interferon, a drug that seems to cause most of these problems post treatment.
Mike mentioned a way to better the odds by using a 4-week stop rule. I think early stop rules are great if you and your medical team agree in advanced and are very disciplined.
That said, they sometimes can be a slippery slope , say if you're close to be UND but not UND at week 4. By that time you're somewhat committed both medically and psychologically and it may be easy to convince yourself to carry on with lesser odds.
The other point is that even if you are UND at week 4, you will still have to treat for 48 weeks unless you are willing to opt for a shorter 12 or 16 week course.
Personally, I think a shorter course for someone like yourself might be a good option if you decide to treat although most here do not agree on the shorter course. That would be my recommendation if you decided to treat -- stop at week 4 if not UND and then only treat 12-16 weeks. But again, my first recommendation would be not to treat -- to watch and wait.
I believe it was suggested that you have a better chance of being cured now, with little or no liver damage, as opposed to if you waited. A recent study does not bear this out. What it said is that all stages (except stage 4) have an equally good chance of being cured with treatment. Given that you're at stage 0 now, you have a long way to go before the odds of treatment would decrease with SOC.
Lastly, I wasn't entirely clear on how long you've had the virus. If you think it was very recent, you might test viral load again to make sure that you didn't clear on your own. A recent retrospective study analysis showed that 40% of women clear the virus on their own.
Good luck with your decision, but just make sure you take the time to educate yourself before making the decision. You might go over to this site as well, and ask, for other points of view. Just keep in mind that most of the people on sites like ours have either treated, are treating, or are seriously considering treatment and opinions expressed are no doubt influenced by that. Here's the other site.
http://www.janis7hepc.com/
All the best,
-- Jim
As already mentioned, in the end, treating or not treating becomes a very personal decision with many factors to consider. Some medical and some not.
From a quick read of the above posts, it seems that the majority of posters are recommending treatment.
We've had numerous threads like this before, and I'd venture to say that in a majority of those past threads, the sentiment was toward not treating for a genotype1 with no liver damage. At least that is my recollection.
So, in a sense, the sentiment in any one given thread depends on who showed up that day to post. You might therefore want to search the archives for similar threads to give yourself the advantage of an even more diverse input.
In fact, spending a weekend -- not just an hour or so -- back reading posts here, will give you a much better take on many of the issues you might face treating or not treating.
As to my opinion, and it has to be very general since I only know a snippet of your history -- I would strongly recommend you do not treat now and go into what is called a "watch and wait" mode.
A number of reasons for this. First, you have the hardest to treat genotype -- genotype 1 -- which means that right now you have around a 50-50 chance of success with treatment if you treat for 48 weeks. You should know that there is already a drug in trial -- Telaprevir -- that is showing slightly better cure rates -- around 60% -- but with only 24 weeks of treatment.
As someone who has treated (I treated when told I was between stage 3 and 4) I can't tell you how much of a life-impacting diffference 24 weeks might make, instead of 48 -- at least in my case.
Also, beyond treatment, many here have reported post treatment side effects from the treatment drugs. Another reason to favor a 24 versus 48 week treatment. And keep in mind, that down the road -- perhaps 7-10 years -- treatments may even be shorter than 24 weeks for geno 1's, and they may not even use interferon, a drug that seems to cause most of these problems post treatment.
Mike mentioned a way to better the odds by using a 4-week stop rule. I think early stop rules are great if you and your medical team agree in advanced and are very disciplined.
That said, they sometimes can be a slippery slope , say if you're close to be UND but not UND at week 4. By that time you're somewhat committed both medically and psychologically and it may be easy to convince yourself to carry on with lesser odds.
The other point is that even if you are UND at week 4, you will still have to treat for 48 weeks unless you are willing to opt for a shorter 12 or 16 week course.
Personally, I think a shorter course for someone like yourself might be a good option if you decide to treat although most here do not agree on the shorter course. That would be my recommendation if you decided to treat -- stop at week 4 if not UND and then only treat 12-16 weeks. But again, my first recommendation would be not to treat -- to watch and wait.
I believe it was suggested that you have a better chance of being cured now, with little or no liver damage, as opposed to if you waited. A recent study does not bear this out. What it said is that all stages (except stage 4) have an equally good chance of being cured with treatment. Given that you're at stage 0 now, you have a long way to go before the odds of treatment would decrease with SOC.
Lastly, I wasn't entirely clear on how long you've had the virus. If you think it was very recent, you might test viral load again to make sure that you didn't clear on your own. A recent retrospective study analysis showed that 40% of women clear the virus on their own.
Good luck with your decision, but just make sure you take the time to educate yourself before making the decision. You might go over to this site as well, and ask, for other points of view. Just keep in mind that most of the people on sites like ours have either treated, are treating, or are seriously considering treatment and opinions expressed are no doubt influenced by that. Here's the other site.
http://www.janis7hepc.com/
All the best,
-- Jim
I just wanted to pipe up a bit and say even if I was a RVR as a geno1a - do the whole 48 weeks dictated by current SOC. 1a is the hardest strain and making sure it is gone for good is priority over anything.
Unfortunately none of us can tell you whether to treat or not. Some factors are things like do you have good medical insurance? do you have a good support/family system that can assist you? do you have a difficult job that requires a lot of thinking or is very active?
Treatment is doable but can be dreadful at times. I had geno 1a and geno 1b and ended up doing 72 weeks. I lost 75% of my hair and my skin looked grey and stretched so tight over my skin that I looked like a vampire - but I had decided before my biopsy I would treat no matter what the results were as long as my kids were both ok. Ended up being a stage 3 so it didn't matter but...I have achieved SVR and have been virus clear for a year so it was worth every minute.
Good luck in your decision. Just remember - the odds are the best for you to clear the first time and it gets harder if you do have a relapse so if you go for it GO FOR IT! Don't buy into any concept of stopping early - not with your genotype!
Unfortunately none of us can tell you whether to treat or not. Some factors are things like do you have good medical insurance? do you have a good support/family system that can assist you? do you have a difficult job that requires a lot of thinking or is very active?
Treatment is doable but can be dreadful at times. I had geno 1a and geno 1b and ended up doing 72 weeks. I lost 75% of my hair and my skin looked grey and stretched so tight over my skin that I looked like a vampire - but I had decided before my biopsy I would treat no matter what the results were as long as my kids were both ok. Ended up being a stage 3 so it didn't matter but...I have achieved SVR and have been virus clear for a year so it was worth every minute.
Good luck in your decision. Just remember - the odds are the best for you to clear the first time and it gets harder if you do have a relapse so if you go for it GO FOR IT! Don't buy into any concept of stopping early - not with your genotype!
Hi Annie,
Looks like we were in the same boat. I was 29 when i started treatment. I was 1a and my VL was 899.(barely detected) I had no liver damage. I chose to treat and am very glad I did.. Please read up on RVR, which means rapid responder. If you can acheive this by week 4 of treatment, there are studies that suggest that you would only need 24 weeks of treatment. I chose to treat for 36 weeks and cleared..I am so happy that the new drugs are around the corner but thankfully i will not need them. My advice is to try the treatment, if you respond to the meds well, then stick with it. If you end up being a rapid responder , do the 24 weeks and BE DONE!! If you do not resond early and you find that the tx is not tolerable than call it quits and wait for the new drugs. You are very lucky you have the option to choose.. Good luck!!
Looks like we were in the same boat. I was 29 when i started treatment. I was 1a and my VL was 899.(barely detected) I had no liver damage. I chose to treat and am very glad I did.. Please read up on RVR, which means rapid responder. If you can acheive this by week 4 of treatment, there are studies that suggest that you would only need 24 weeks of treatment. I chose to treat for 36 weeks and cleared..I am so happy that the new drugs are around the corner but thankfully i will not need them. My advice is to try the treatment, if you respond to the meds well, then stick with it. If you end up being a rapid responder , do the 24 weeks and BE DONE!! If you do not resond early and you find that the tx is not tolerable than call it quits and wait for the new drugs. You are very lucky you have the option to choose.. Good luck!!
Tell all your fears to go sit in the chair for awhile and come back when they've had a little nap. Then, check your instincts. Sounds to me, they are trust whorthy.
Maybe ask the Dr. to clairify the recommendation. I just know I wish I had not waited.
David
ps. if possible, when the fears are asleep, kill them.
Maybe ask the Dr. to clairify the recommendation. I just know I wish I had not waited.
David
ps. if possible, when the fears are asleep, kill them.
Thanks for the very informative response. I think (just so I can sleep) I've decided to make my decision by May 1st, I'm a Bookkeeper so I love deadlines (not really, but their a very real part of my life). That gives me a coulpe of months to gather info and decide what's best for my family and myself.
Annie
Annie
The terms active and inactive are not appropriate in a characterization of hepatitis c. You either have replicating HCV or you do not. Some fortunate people (estimates are from 15% to 25% of infected people) have been infected but clear the virus without the need for drugs but they still carry the antibodies for HCV (hepatitis c virus). Perhaps that is what Fretboard is referring to - antibodies only = inactive. The majority of people, like you, have the virus and will only become undetectable if they treat.
As you said, you have a low viral load and no liver damage and those are positive factors for treatment success. If you are a type 1a that may be a negative factor. I have read studies that suggest that type 1a is more difficult to successfully treat than type 1b. In the recent past all type 1s were considered to be about the same in terms of the likelihood of treatment outcome. Now there is some doubt and I think the general consensus is that type 1a is more resistant to treatment than type 1b. If that is true then you have one negative factor.
You also said that you're that type of person who doesn't like to wait around and would like to treat right away. I can relate to that personality type all too well.
I think one approach might be to start treatment now and if you are not undetectable at week 4 then you and your doctor should decide whether you should continue. Treatment isn't easy so I think that with your liver condition and low viral load you are not up against the wall - like many people here are. You could wait for newer drugs. But, if you are undetectable at week 4 then there is a sound basis to believe that your treatment will be successful if you treat for 48 weeks. Treatment can also be successful even if you still are detectable at week, depending on your viral load, but it's a different ball game at that point. Depending on the point at which you do become undetectable extending treatment beyond 48 weeks becomes the best approach to becoming SVR and that can be a difficult ordeal.
It's really a personal decision Anne. If you are ok waiting I don't think you'd be putting yourself at risk. And if you can't just sit by and wait then you could try treatment and see how rapidly you respond and how well you tolerate treatment.
By the way, an increase in viral load doesn't necessarily correlate with liver damage. One can have a low viral load and significant damage or a high viral load and little or no damage. Viral load isn't an indicator or predictor of liver damage so don't worry about that when you are deciding whether to treat. It appears that a low viral load is associated with better treatment outcome and you do have that in your favor.
Good luck, Mike
As you said, you have a low viral load and no liver damage and those are positive factors for treatment success. If you are a type 1a that may be a negative factor. I have read studies that suggest that type 1a is more difficult to successfully treat than type 1b. In the recent past all type 1s were considered to be about the same in terms of the likelihood of treatment outcome. Now there is some doubt and I think the general consensus is that type 1a is more resistant to treatment than type 1b. If that is true then you have one negative factor.
You also said that you're that type of person who doesn't like to wait around and would like to treat right away. I can relate to that personality type all too well.
I think one approach might be to start treatment now and if you are not undetectable at week 4 then you and your doctor should decide whether you should continue. Treatment isn't easy so I think that with your liver condition and low viral load you are not up against the wall - like many people here are. You could wait for newer drugs. But, if you are undetectable at week 4 then there is a sound basis to believe that your treatment will be successful if you treat for 48 weeks. Treatment can also be successful even if you still are detectable at week, depending on your viral load, but it's a different ball game at that point. Depending on the point at which you do become undetectable extending treatment beyond 48 weeks becomes the best approach to becoming SVR and that can be a difficult ordeal.
It's really a personal decision Anne. If you are ok waiting I don't think you'd be putting yourself at risk. And if you can't just sit by and wait then you could try treatment and see how rapidly you respond and how well you tolerate treatment.
By the way, an increase in viral load doesn't necessarily correlate with liver damage. One can have a low viral load and significant damage or a high viral load and little or no damage. Viral load isn't an indicator or predictor of liver damage so don't worry about that when you are deciding whether to treat. It appears that a low viral load is associated with better treatment outcome and you do have that in your favor.
Good luck, Mike
By active do you mean that I could infect other people, or it could get worse? The answer is yes. If that's not what you mean could you please explain, I'm still learning.
Thanks Annie
Thanks Annie
I personally would treat now while you have minimal damage.
(That's what I'm doing) The new drugs are always right around
the corner - but somehow they never get here.
I've been waiting 4 or more years now for these new "miracle" drugs.
What we got to tx with- is the best we got right now.
It is a personal decision and I chose to tx with current meds.
I, like you, have minimal damage and geno1....
Geno--1b
BX--S1/G1
UND since wk 12
Good luck whatever you decide...
enigma
(That's what I'm doing) The new drugs are always right around
the corner - but somehow they never get here.
I've been waiting 4 or more years now for these new "miracle" drugs.
What we got to tx with- is the best we got right now.
It is a personal decision and I chose to tx with current meds.
I, like you, have minimal damage and geno1....
Geno--1b
BX--S1/G1
UND since wk 12
Good luck whatever you decide...
enigma
That's a very personal decision you have to make on your own, that's why your doctor answered that way. Considering you are a Grade 0 and you didn't say if your HepC is active or not, that is very important. In other words why would you treat a disease that was inactive? Just my way of thinking. good luck
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