Aa
R1626
New to this site. Hello everyone. I have a couple of questions and stumbled on this site tonite and wish I had found it when I started tx back in August. Yes, 6 months in and still breathing. Not getting around like I used to and have lost a lot of weight and food is the last thing on my mind and my mental state is now being effected. I have type 4a which they treat the same as 1a and little if any scarring on my liver. At least that was the case a couple of yrs ago when diagnosed. I am on pegintron (weekly shots and ribavirn in am and pm). This has been the fight of my life. I am very fortunate that I do not have to work (yet) and my heart goes out to all who do because I do not know how you do it. Started tx in August with a vl of 450,000. 3 month check on vl and down to 5,0000. Not quite what the Dr. wanted (he wanted zero) but enough of a drop to let me continue to rid this virus. Last week I got what was not the worst news but not good. He told me if it were not at zero in the 6th month we would and did discuss stopping tx. Well last week was my 6 month vl check, it was at 1550. OMG. He said the decision was mine to keep going but the odds are really not in your favor if at 6 mo. it is not zero. Considering the vl continuing to drop he allowed me to stay on another 3 months and if it is not a zero he will most certainly stop tx's and we will wait on something that may come out that is new on the horizon. He NEVER mentioned R1626. I really wish I had found this site a while back but oh well. Maybe me being in this far can help someone that is just getting started. This is a battle like nothing I've ever had to endure.
To everyone on this site, "you were just added to another prayer list and good luck to you all". Unlike myself, keep up the support with one another. I wish I had known about this sooner.
Any info would be greatly appreciated and God Bless All!
debi
To everyone on this site, "you were just added to another prayer list and good luck to you all". Unlike myself, keep up the support with one another. I wish I had known about this sooner.
Any info would be greatly appreciated and God Bless All!
debi
Hey, jmjms' advice is VERY good advice. good luck, stick around there's alot of info and support here. jerry
I can only comment generally because of the little you've posted -- or at least I've read -- about yourself, plus no profile.
In general, someone who who has less than a two-log drop at week 12 is considered a non-responder and often are told to quit treatment.
Those that have a two-log drop by week 12 but are still detectible are considered slow responders. Sometimes slow responders stop treatment and sometimes they continue on to week 24. If still detectible at week 24, they are usually advised to quit. If UND at week 24, then they might do what is called extended treatment to 72 weeks. Sometimes even a non-responder continues treating if UND by week 24, although the study data I've read is very pessimistic.
I haven't heard any professional recommendations for someone to continue treatment if still detecible at week 24 (6 months) although that doesn't mean some don't try. One argument sometimes made to continue treatment, whatever, is to improve liver damage as opposed to trying for a cure. I don't necessarily buy this argument, but in any case you don't have significant liver damage so that argument doesn't pertain.
In short, as a geno 4 with little liver damage -- I can't see any reason for you to continue treating if you're still detectible at week 24 -- and I'm kind of shaking my head if all your doctor said is 'it's your choice". Is your doctor a liver specialist (hepatologist) or a gastro?
All said, I'm not a doctor -- really none of us are here right now, so so yourself a great service, collect your medical records, and see a liver specialist (hepatologist) for a second opinion on all this.
All the best,
-- Jim
In general, someone who who has less than a two-log drop at week 12 is considered a non-responder and often are told to quit treatment.
Those that have a two-log drop by week 12 but are still detectible are considered slow responders. Sometimes slow responders stop treatment and sometimes they continue on to week 24. If still detectible at week 24, they are usually advised to quit. If UND at week 24, then they might do what is called extended treatment to 72 weeks. Sometimes even a non-responder continues treating if UND by week 24, although the study data I've read is very pessimistic.
I haven't heard any professional recommendations for someone to continue treatment if still detecible at week 24 (6 months) although that doesn't mean some don't try. One argument sometimes made to continue treatment, whatever, is to improve liver damage as opposed to trying for a cure. I don't necessarily buy this argument, but in any case you don't have significant liver damage so that argument doesn't pertain.
In short, as a geno 4 with little liver damage -- I can't see any reason for you to continue treating if you're still detectible at week 24 -- and I'm kind of shaking my head if all your doctor said is 'it's your choice". Is your doctor a liver specialist (hepatologist) or a gastro?
All said, I'm not a doctor -- really none of us are here right now, so so yourself a great service, collect your medical records, and see a liver specialist (hepatologist) for a second opinion on all this.
All the best,
-- Jim
Thanks so much for the information. Yes I do believe I am at a road block. I have tolerated the tx pretty well with my Dr. telling me I'll come out on the other end with no bad long term effects. I really wonder about that though! Has anyone else ever known someone who was responding well and it took more than 6 months to go to zero?
I'm sorry to say that since you did not clear the virus at 12 or 24 weeks that you should consider stopping treatment. Why put you body through this harsh treatment and possibly damage it from the interferon/ribavirin when it is obvious that you will not clear. Studies have shown that if not clear by 12 weeks then chances of clearing the virus drop considerbly and if not clear by 24 weeks then almost no chance. Perhaps regroup and try and get into a trial with one of the new drugs or if minimal liver damage wait for the new drugs coming out in several years. best of luck
im just about finished 66 weeks and didnt clear till month 5. i then began overdosing riba and i am going well beyond 48 weeks in the hopes of having a decent chance.
if this is a good time to for you to try to get this overwith, you can try to make up for the slow viral response by extending and overdosing. im assuming you are dosing as much as your weight will allow.
check this and make sure. if you are on a weight break point try to get your doc to give you the next higher dosage. at this stage you will need to go a total of 72
weeks and thats a long haul. im not even going to make it that far and i wanted to.
if i was you, i would try to overdose right now to knock out the last little bit.
your doc will work with you on that, do it now though, you need to be zero by next week. check it every week until you reach zero. you are out of time.
if it is not a good time in your life to make this hard and risky sacrifice, then quit and wait for new drugs. this is my recommendation. the price of losing is too high. you have a better than average chance of losing.
you can wait and have a much better chance with new and fully tested drugs.
if this is a good time to for you to try to get this overwith, you can try to make up for the slow viral response by extending and overdosing. im assuming you are dosing as much as your weight will allow.
check this and make sure. if you are on a weight break point try to get your doc to give you the next higher dosage. at this stage you will need to go a total of 72
weeks and thats a long haul. im not even going to make it that far and i wanted to.
if i was you, i would try to overdose right now to knock out the last little bit.
your doc will work with you on that, do it now though, you need to be zero by next week. check it every week until you reach zero. you are out of time.
if it is not a good time in your life to make this hard and risky sacrifice, then quit and wait for new drugs. this is my recommendation. the price of losing is too high. you have a better than average chance of losing.
you can wait and have a much better chance with new and fully tested drugs.
Debi,
I'm not sure what you mean, that he never mentioned it. It's a trial drug only at this point. It's not FDA approved and not a prescribable drug yet. You were already in treatment and to my knowledge, it's in Phase II for treatment naive patients. The trials for this have just gotten started for the next round and I don't think you've missed anything with regards to R1626 or that your doctor missed telling you anything. I'm not sure there was anything to tell you about it when you started tx.
I'm sorry results have not been better for you. Are you asking for input on the decision you have to make now? What sort of info are you looking for exactly?
Hang in there.
Trish
I'm not sure what you mean, that he never mentioned it. It's a trial drug only at this point. It's not FDA approved and not a prescribable drug yet. You were already in treatment and to my knowledge, it's in Phase II for treatment naive patients. The trials for this have just gotten started for the next round and I don't think you've missed anything with regards to R1626 or that your doctor missed telling you anything. I'm not sure there was anything to tell you about it when you started tx.
I'm sorry results have not been better for you. Are you asking for input on the decision you have to make now? What sort of info are you looking for exactly?
Hang in there.
Trish
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