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.
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.
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..
>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.
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...
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.
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.
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.
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,
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.
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.
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.
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.
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
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.
I think I like your doc. By not considering more tx he's showing that he has your interests at heart even though he doesn't know of half the sides. You've been through a lot and when 48 comes along it's a firm target and means you have a date when recovery begins. You even navigated the 'cranky pants' part of the cruise to heck. The 24 week to first post-pcr can be agonizing, after a while I cracked - at 20 weeks. Maybe a sooner post pcr...
I feel a lot better after your comments. I guess my fear was that he was basing his decision on me being a "whiner/complainer" which I really have tried not to do with him. I save that for my husband and you guys!! LOL
Sept 15 is my last shot and he also said I didn't have to continue the pills for the following week. I'm happy about that. This friday will be 40, so I'm only looking at another 8 weeks. He put me on another two sx meds. I developed an ulcer where my esophagus meets my stomach because of the GERD.
And he prescribed 2.5 valium 3 times a day for the muscle spasms in my back. I don't know if it's helping my back but it's making the day rather interesting.
sorry but he was not undetable at week 12. he did have a 3.9 log drop which is respectable. better than the cherished 2log. at week 19 he was 4.6 log down also ok. i hope he fights as it seems
like he is doing well. he may decide to extend tx a bit to be sure. having cirrosis makes it harder to svr but he has no other options. if these new drugs pan out in a few years he has more hope. if not there is always the last resort,liver transplant. he should be nice to the kids because they are the best doners.
i have been told cirrosis is not always life threatening.
Please note my post above this one. The thread was filling up, and I suspected you might not revisit the information. I think it is very important to act assertively along with your husband at this point in his tx regime. It is critically important that he become undetectable by week 24, because the odds of SVR take a nosedive for those who are still positive after week 24, even with extended tx. You may be able to get his doctor (or a new doctor) to throw in a 'tweak' or two, to make sure the viral load keeps moving in the right direction! (Down, and quickly). He is virtually almost undetected right now, especially if one were using the old PCR tests, so he must keep everything maxed out (and if possible slightly increased) in order to get the desired 24 week result. After that, if he makes it to undetected, it becomes a matter of grinding out tx to the full 72 week extension target, keeping both components of tx at the maximum levels throughout if humanly possible. It really can be done, and I have known people who have gone for more than two years on tx, and gotten the SVR, after previous failed attempts. He IS a responder....just a little slower than optimum...but that is OK. Many of these types of patients have achieved SVR in the hands of skilled and knowledgable doctors.
My stance on this issue is very emphatic! I also did not clear at 12 weeks, and just barely cleared by week 20, but I did have over a 2 Log drop at week 12, as did your husband. The protocol for GT 1's, who clear after week 12, AND who are undectable BY WEEK 24, is to go for 72 weeks. Most of the recent studies have shown the benefit of extending for this group!
Back to my story: I kept the Peg doses as high as possible, used procrit to keep the Riba at maximum levels, and went for the full 72 weeks. I am SVR and nearing 3 years past the end of my tx. Your doctor MUST test at or near week 24, to see if your husband is clear. If so, his odds are pretty decent, IF he does the 72 week regime. He is reacting and responding to the interferon pretty well, and is right on the fence. A few tweaks and he should definitely be capable of good SVR odds.
The other thing that I would explore with his doctor (or another more experienced HCV doc who has treated 'difficult' cases), is the possibility of adding a little more Peg to the mix. The interferon is the 'workhorse' drug, and provides the muscle to clear the virus. Sometimes an adjestment in dose speeds the decline curve, and provides better odds of SVR.
Additionally, I would look at his body weight and maximum Riba guidelines, and make absolutely sure that he stays at maximum Riba throughout tx. If he is CLEAR at week 24, he has a good shot at becoming a sustained responder, as long as he then goes the extended period for a total of 72 weeks.
I would REALLY be concerned at his doctor throwing in the towel with your husbands response. The excellent Log drop at 12 weeks makes him CLEARLY a potential SVR case. The 24 week PCR is CRITICAL!!!!!! I can't be any more emphatic. And waiting for 48 weeks to do the PCR is truly 'flying in the dark'. This doctor should know better. Has he treated lots of type 1's? Does he have a track record of success in getting SVR's for them? Mine had that reputation when I enlisted his help for my second, and final tx.
Your husband should be getting 'state-of-the-art' advice and guidance by his doctor, and apparently is not.
This is not the time to be passive about the situation. If you need a referral to a TOP HCV doctor, I am sure board members can provide some quality recommendations, depending on your location.
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