Aa
When to stop treatment????
Hello again! I just wanted to thank everyone for being here. The information we have gained has been so helpful!!!
Today the doctor (he was coving for a regular GI) was telling my husband he should think about stopping treatment. He is stage 4 cirrhosis, Hep C 1b. Pre treatment viral load was 2 million, 12-week viral load 275, 19 week viral load 59, all done with the Hepamax. The doctor said that since he did not clear at 12 weeks his chances were less than 5% for the medication to work. He is on pegasys 180 mg + ribavirin 1200mg a day.
I do know that it was not good that he was undetectable at week 12, but I did not know that his chances were that bad. The doctor did not seem very positive about his response to treatment and stated that he was not a very good candidate for treatment from the start due his platelet count. However, his platelets were within normal limits the last lab draw.
Does any one have any information on what he should do? He has gotten very sick, but is a fighter and refused to stop treatment. The doctor said that he would not test the viral load again until week 48. I thought that after someone reaches undetectable the treatment would continue for another 26-28 weeks, or something like that.
Any suggestions or input would be greatly appreciated.
Airborne's wife
Today the doctor (he was coving for a regular GI) was telling my husband he should think about stopping treatment. He is stage 4 cirrhosis, Hep C 1b. Pre treatment viral load was 2 million, 12-week viral load 275, 19 week viral load 59, all done with the Hepamax. The doctor said that since he did not clear at 12 weeks his chances were less than 5% for the medication to work. He is on pegasys 180 mg + ribavirin 1200mg a day.
I do know that it was not good that he was undetectable at week 12, but I did not know that his chances were that bad. The doctor did not seem very positive about his response to treatment and stated that he was not a very good candidate for treatment from the start due his platelet count. However, his platelets were within normal limits the last lab draw.
Does any one have any information on what he should do? He has gotten very sick, but is a fighter and refused to stop treatment. The doctor said that he would not test the viral load again until week 48. I thought that after someone reaches undetectable the treatment would continue for another 26-28 weeks, or something like that.
Any suggestions or input would be greatly appreciated.
Airborne's wife
My doctor recently stopped my treatment at the 39 week time. I had been treating with daily Infergen and high doses of Ribavirin. This last one was my 8th time at treating. I've never had a 'undetected or cleared' status. So, me doctor just stopped me and said that it's not working and that I have interferon/Ribavirin resistance at this point. So, I'm just going to trust that God will heal me or that he will make the FDA approve one of the next drugs down the road and that it will work for me. I wish you and your husband well wishes so that his body will start to heal.
Susan
Susan
There have been a few memebers here in the same situation, and a few of them have gone on to obtain SVR....Cuteus, califia, I hope they chime in here...
Usually the cut off if still detectable is week 24..The thing here, is that your husband IS responding. He is just what is refered to as a "slow" responder..He should ask for another PCR at week 24, and if detectable, then think about stopping...But if undetectable, he should continue from there for 36 weeks..
Others will come along with more info..
Usually the cut off if still detectable is week 24..The thing here, is that your husband IS responding. He is just what is refered to as a "slow" responder..He should ask for another PCR at week 24, and if detectable, then think about stopping...But if undetectable, he should continue from there for 36 weeks..
Others will come along with more info..
>doctor said that since he did not clear at 12 weeks his chances were less than 5% for the medication to work.
Thats just not true. Lack of a 2 log drop at 12 weeks would give that sort of chance but a 2 log drop or more gives about 20/25% chance of SVR. He needs to get undectectable at 24 weeks though, if he is still detectable at that stage chances are less than 5%.
That is all based on 48 week treatment length, if he could tolerate longer treatment it might be worth pushing for it. I didn't make the 2 log drop at 12 weeks, was detectable at 24 weeks but was clear at 36 weeks, I'll be going for 72 weeks treatment length.
At stage 4 it might be worth pushing the envelope somewhat.
Thats just not true. Lack of a 2 log drop at 12 weeks would give that sort of chance but a 2 log drop or more gives about 20/25% chance of SVR. He needs to get undectectable at 24 weeks though, if he is still detectable at that stage chances are less than 5%.
That is all based on 48 week treatment length, if he could tolerate longer treatment it might be worth pushing for it. I didn't make the 2 log drop at 12 weeks, was detectable at 24 weeks but was clear at 36 weeks, I'll be going for 72 weeks treatment length.
At stage 4 it might be worth pushing the envelope somewhat.
Hi. I am stage 4 and have low platelets too. What everyone said above is true. Some doctors just don't understand but we are fighting for our lives here. While he is on treatment, he is helping his liver and even with cirrhosis it can repair some of the damage. I think it is 36 weeks after undetected is what they say. But with stage 4 it is harder to clear the virus. That was the case for me. I relapsed but I want to go back on treatment. At stage 4 we don't have much choice. I say go for it, if he can tolerate it. Then if he doesn't clear talk to dr about maintance. Until new drugs come along. Tell him to hang in there and I hope the SX are tolable. He sounds like a fighter I wish you all the best. Come back and let us know how things are going. Take care...
when I said 36 weeks after und. I meant that is how long he should treat. But you said they are not testing him again until week 48. Like they said above I would ask for a sooner PCR. Take care
Oh my goodness I guess I am not awake that last post was for you not mikeoy I pushed wrong button. Were is the coffee!!
I was not clear until somewhere between week 12 and 24 (I was at 400 the whole time before) and my doctor would NOT let me quit until I waited until 24. So...I may have to treat longer but I DID clear the virus (so far) and THAT is the whole goal.
I wouldn't consider with such LOW numbers quitting until 24, after all he is responding and there is ALWAYS A CHANCE. Unless the odds were ZERO then he can still do it right.
I wouldn't consider with such LOW numbers quitting until 24, after all he is responding and there is ALWAYS A CHANCE. Unless the odds were ZERO then he can still do it right.
I don't understand completely about the different percentages at 12 and 24. I do know that I'm 1a,on 180peg and 1000mg riba. I had a starting VL of 18.7million. 12wk 391,000, 24wk 3140. 39wk undetectable down to 50. My dr from the beginning said as long as you can tolerate treatment you do 48wks.
I have no idea how low my chances may be of SVR. But right now there is less or no virus, and hopefully less stress on the body and liver.
I'm am a stage 1-2, not a stage 4 like your husband. I'm in no position to know how much more that may affect his situation. I'm in no position and certainly not knowledgeable enough to say whether continuing is the right choice fo your husband. But if he is responding, and he is a stage 4, I would certainly think that exploring all options even if the dr doesn't agree is your husbands choice. Personally, who is the dr to take the 5percent chance away from someone, unless they feel treatment will do more bad than good.
I hope those here that understand and have more relative experience to your husband are able to help you.
I wish you and your husband well,
Don
I have no idea how low my chances may be of SVR. But right now there is less or no virus, and hopefully less stress on the body and liver.
I'm am a stage 1-2, not a stage 4 like your husband. I'm in no position to know how much more that may affect his situation. I'm in no position and certainly not knowledgeable enough to say whether continuing is the right choice fo your husband. But if he is responding, and he is a stage 4, I would certainly think that exploring all options even if the dr doesn't agree is your husbands choice. Personally, who is the dr to take the 5percent chance away from someone, unless they feel treatment will do more bad than good.
I hope those here that understand and have more relative experience to your husband are able to help you.
I wish you and your husband well,
Don
I don't even LISTEN to the odds cause like I said there is ALWAYS a chance, even if it is 1 in 99 I will FIGHT to be that ONE until I know I am not.
Please don't give up.
Strator it is so good to see you posting....I have a feeling that you and I will be around here for a long while fighting away! :)
Has anybody seen my little Beagle dog? Here Beagle beagle beagle.....here beagle beagle beaagle...............
Please don't give up.
Strator it is so good to see you posting....I have a feeling that you and I will be around here for a long while fighting away! :)
Has anybody seen my little Beagle dog? Here Beagle beagle beagle.....here beagle beagle beaagle...............
Mimi,
This is an excerpt from a HCV treatment algorithm provided by the Cleveland Clinic:
http://www.clevelandclinicmeded.com/hcv/cma.htm
This is an excerpt from a HCV treatment algorithm provided by the Cleveland Clinic:
http://www.clevelandclinicmeded.com/hcv/cma.htm
"even if it is 1 in 99 I will FIGHT to be that ONE
until I know I am not."
ME TOO! my new slogan , "I will not go quietly"
until I know I am not."
ME TOO! my new slogan , "I will not go quietly"
I always say they will take me out of this world
"kicking and screaming" I am fighting till the end!
"kicking and screaming" I am fighting till the end!
Hey nyg, just noticed you were looking for Beagle dog......well I had promised him a nice personal walk by me in celebration. Today he is at the beagle spa (been out chasing wabbits and getting dirty) getting all cleaned up for our walk today.
I am sure he will chime in when he is done, maybe after spa and before walk.
Later,
Fisheress
I am sure he will chime in when he is done, maybe after spa and before walk.
Later,
Fisheress
Snookmiester's answer is my understanding, as explained to me by my doctor. At 24 weeks if he were UND then tack 36 weeks on it. Everyone is different though and even if he is pulled from this treatment keep watching for the new stuff. We heppers are becoming such a burden to the health care system that they are going to have to cure us or shot us. Good luck to your family in getting through this thing. Dale
just remember that 36 wks from undetectable is a suggestion not based on any factual studies, it is a medical guess. If you can tolerate longer tx, don't stop at 36 wks, especially if stage 4. I would go at least 48 wks from clearing.
My doctor suggested the same 48 weeks beyond clearing and no doubt would have let me go even longer had I wanted. As a stage 4 -- depending on how well you're tolerating tx, general health, etc, -- it's certainly something to consider. But in any event, you really need that week 24 test to see how well the drugs are taking. Hopefully, your regular GI will be more amenable than the doctor filling in. If not, you might want to seek an outside consult with a liver specialist (hepatologist) who may have more experience in treating slower responders with more liver damage. All the best.
-- Jim
-- Jim
That "sounds" like a good answer but my doctor says that in order to really do it RIGHT you have to do 72 instead of 48 (like Cuteus did and I will do). It's NOT just add 36 on as we mostly believe. For example he said there is NO such thing as a '60 week' course of treatment.
He said that there is no such thing as adding a few random extra weeks, that PROTOCOLS have been established and the medical field doesn't take it lightly...and shouldn't just 'guess' and add on weeks. This is the reason he is sending me to Dr. Jacobson for a second opinion to make SURE I should do the extra time. It's a LOT to have to go to 72 instead of 48.
(And I have to pay cash for Dr. J $600 for the one visit...but it will be worth it for HIS opinion you know? I'll wait and submiit out of network knowing that no matter what he says at least I've done the MOST possible to make sure I am not going to 72 for no reason).
Some people won't agree with him but he's an awesome doctor who wants me to have EVERY chance at beating this thing, and as a 1A and 1B my chances STINK...so I will do what I have to.
He said that there is no such thing as adding a few random extra weeks, that PROTOCOLS have been established and the medical field doesn't take it lightly...and shouldn't just 'guess' and add on weeks. This is the reason he is sending me to Dr. Jacobson for a second opinion to make SURE I should do the extra time. It's a LOT to have to go to 72 instead of 48.
(And I have to pay cash for Dr. J $600 for the one visit...but it will be worth it for HIS opinion you know? I'll wait and submiit out of network knowing that no matter what he says at least I've done the MOST possible to make sure I am not going to 72 for no reason).
Some people won't agree with him but he's an awesome doctor who wants me to have EVERY chance at beating this thing, and as a 1A and 1B my chances STINK...so I will do what I have to.
I'll also piggyback what someone else stated and that it's my understanding that the 5 per cent figure given is much too low since your husband did achieve the 2-log drop. Maybe someone else like Willing will come by with the exact study data but my guess it's closer to 20-25% with 48 weeks of treatment and better if he extends. In any event, as a stage 4, the odds -- while still important -- have to be weighed against the risk of not treating. In other words, even if his odds are less than 50% that doesn't mean he should stop.
-- Jim
-- Jim
NY: For example he said there is NO such thing as a '60 week' course of treatment.
------------------------
Other than for some study protocols, I respectfully disagree with your doctor. My treating hep Dr. -- same league as Dr. J. -- had me treat for 54 weeks which was based on the formula 48 weeks past non-detectible. He also was more than willing to let me go 60 weeks if I so chose. Point I guess is that it doesn't have to be 48 or 72 weeks only -- that's just what some of the trials used. BTW when are you seeing Dr. J? Hope this finds you well.
-- Jim
------------------------
Other than for some study protocols, I respectfully disagree with your doctor. My treating hep Dr. -- same league as Dr. J. -- had me treat for 54 weeks which was based on the formula 48 weeks past non-detectible. He also was more than willing to let me go 60 weeks if I so chose. Point I guess is that it doesn't have to be 48 or 72 weeks only -- that's just what some of the trials used. BTW when are you seeing Dr. J? Hope this finds you well.
-- Jim
I also want to chime in that I don't think your hubby should throw in the towel. It might be time for another consult -- and most probably extended treatment, but he is a responder.
Cuteus and NYG are right -- there is no 36-week after clearing protocol. It was just one study, and a recommendation that was made in that study. Still, that is what I am doing - adding 36 weeks to my 20-week clear PCR test. Since my 12 week was 40IU and my 20 week was clear, standard treatment is still 48 weeks. I am trying to just buy a little insurance.
Jim, I guess you are referring to the Berg study that compared genotype 1s treating for 48 and 72 weeks. In the grand scheme of things there was not much difference in the results. However when you pulled the data apart and analyzed all those not clear at 12 weeks, the results were differnet. Seems like 6000IU/mL was the magic number -- if your PCR was under 6000 at 12 weeks, extending to 72 weeks increased your percent of SVR. There was no mention of degree of liver damage in the study
Cuteus and NYG are right -- there is no 36-week after clearing protocol. It was just one study, and a recommendation that was made in that study. Still, that is what I am doing - adding 36 weeks to my 20-week clear PCR test. Since my 12 week was 40IU and my 20 week was clear, standard treatment is still 48 weeks. I am trying to just buy a little insurance.
Jim, I guess you are referring to the Berg study that compared genotype 1s treating for 48 and 72 weeks. In the grand scheme of things there was not much difference in the results. However when you pulled the data apart and analyzed all those not clear at 12 weeks, the results were differnet. Seems like 6000IU/mL was the magic number -- if your PCR was under 6000 at 12 weeks, extending to 72 weeks increased your percent of SVR. There was no mention of degree of liver damage in the study
I had an interesting conversation with my dr yesterday. I'm scheduled for a PCR at week 48 (after the shot) and I asked him why wouldn't we want to do it 4 weeks later to see if I relapsed. The next one he's doing is at 24 weeks post TX.
His comment was "Why would you want to know at 4 weeks? With the problems and sides you've had I would not put you back on the medicine."
Wow, he caught me really off guard with that one. I already knew I didn't want to do the tx again, but it's always nice to know I can change my mind if I want to. I'm not sure why he said that....I haven't even told him about half my sides.
I didn't even think to ask what he would recommend if I'm relapsed at 24 weeks.
His comment was "Why would you want to know at 4 weeks? With the problems and sides you've had I would not put you back on the medicine."
Wow, he caught me really off guard with that one. I already knew I didn't want to do the tx again, but it's always nice to know I can change my mind if I want to. I'm not sure why he said that....I haven't even told him about half my sides.
I didn't even think to ask what he would recommend if I'm relapsed at 24 weeks.
Why not split the difference and ask for a 12 week PCR? I would think that an UND would give you a great peace of mind.
Have an Answer?
You are reading content posted in the Hepatitis C Community
Learn about this treatable virus.
Getting tested for this viral infection.
3 key steps to getting on treatment.
4 steps to getting on therapy.
What you need to know about Hep C drugs.
How the drugs might affect you.
These tips may up your chances of a cure.
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
