Aa
From Merry's IL28b posting
Too important to be buried:
http://people.genome.duke.edu/~dg48/L8464-0710-Service-Announcement-FINAL.pdf
http://people.genome.duke.edu/~dg48/L8464-0710-Service-Announcement-FINAL.pdf
OMG< you're right, I am sorry, spank me...so long since I even thought of who's got what.
OK, well then, him treating 4's in the Alinia study meant they were middle eastern or african imigrants right?? OK so now I'm wondering, were they 4a or 4 b...especially if they were Africans that would be something worth knowing.
Here's another thought....could there have been asians who got the type 4 while in Egypt? I ask because HCV is rampant there...meaning through drug use, or through going to see a doctor they could easily have gotten type 4 while in country.
HMM...
hey, Dsrt, thanks for the comliment, even though my post only shows to go I don't deserve it...but anyway...we all do try...
getting to your warning,
I never held that against you, it turns out you were right, and unfortunately since I had only known about the disease for 3 months before beginning tx so there was no way I could know all that stuff. I still think, given the new study showing 72 weekers could clear is what drove me to it, but of course, not understanding mutants or resistant strains, let alone the Interleukin28 factors, which weren't even whispered then, all I could do was try. You may remember also, once I tried the suggestion of adding fat to Riba I quickly went UND, which spurred me on.
This disease does funny things to us doens't it....for instance, early on, I was like NEo in the Matrix...only wanted to RUN and live to fight another day....
next time around...I'll be like Neo entering the bank building, armed to the teeth and ready for bear!! giggle.....better get in line now, I'm planning on kicking buttz on this thing yet!!
mb
OK, well then, him treating 4's in the Alinia study meant they were middle eastern or african imigrants right?? OK so now I'm wondering, were they 4a or 4 b...especially if they were Africans that would be something worth knowing.
Here's another thought....could there have been asians who got the type 4 while in Egypt? I ask because HCV is rampant there...meaning through drug use, or through going to see a doctor they could easily have gotten type 4 while in country.
HMM...
hey, Dsrt, thanks for the comliment, even though my post only shows to go I don't deserve it...but anyway...we all do try...
getting to your warning,
I never held that against you, it turns out you were right, and unfortunately since I had only known about the disease for 3 months before beginning tx so there was no way I could know all that stuff. I still think, given the new study showing 72 weekers could clear is what drove me to it, but of course, not understanding mutants or resistant strains, let alone the Interleukin28 factors, which weren't even whispered then, all I could do was try. You may remember also, once I tried the suggestion of adding fat to Riba I quickly went UND, which spurred me on.
This disease does funny things to us doens't it....for instance, early on, I was like NEo in the Matrix...only wanted to RUN and live to fight another day....
next time around...I'll be like Neo entering the bank building, armed to the teeth and ready for bear!! giggle.....better get in line now, I'm planning on kicking buttz on this thing yet!!
mb
One small bone to pick. I think most 'Asians' are either 3s or 6s - not 4s.
Other than that, I stand in awe of all the knowledge you've acquired - you've become one of the most important voices on this board.
I always felt like cr@p being the only one to tell you to throw in the towel when you didn't get an early response and all the other 'rahs rahs' here were telling you 72 weeks was 'doable'. I truly believe that someday SVR will be possible for everyone. When that day comes for you, I will be the first in line to congratulate you.
Respectfully,
d
Other than that, I stand in awe of all the knowledge you've acquired - you've become one of the most important voices on this board.
I always felt like cr@p being the only one to tell you to throw in the towel when you didn't get an early response and all the other 'rahs rahs' here were telling you 72 weeks was 'doable'. I truly believe that someday SVR will be possible for everyone. When that day comes for you, I will be the first in line to congratulate you.
Respectfully,
d
sorry to take so long to respond, was out of town.
If you are already UND there's no point in not continuing, and I think your point is worth considering, insurances aren't as well educated as geneticists, so until they all get up to speed they wouldn't understand the reasoning necessarily.
That said, I think what Willing said makes the most sense. If you were stage 1 or 2, I would have advised you to wait for the PI's at least, and were you also TT I would have said wait for the polymers as well, only because again, doing it right the first time makes the most sense.
It's a hard sell for those who haven't undergone tx, but for my money, I'd do any and EVERYthing before and during, to make sure the first shot worked.
As to the issue with not using the PI on the CC's chatter...I don't necessarily agree with the prevailing view there, only because the PI does make a difference in one study, albeit not always a stellar one.
As to the Egyptian study, I don't think their stats can be applied in this instance.
My reasoning is, none of the folks in that study were Egyptians. They were
immigrants to Egypt, and I'm assuming most were from Asian countries as this is where most Arab states import their immigrant labor from. They were all Type 4's, also indicative of asian decent. Ergo, we cannot extrapolate that those in the study were all just lucky African's with aberrant genotypes. The true African's, the Negro races, are the ones that rarely have the CC or CT combo.
The Alinia result, in my humble opinion were as good as they were not because Alinia is so remarkable but because the physician who conducted the study policed his test subjects daily, and made sure he got 100% compliance. 100% compliance will always result in better stats, I'm not surprised they saw the bump particularly with that genotype, given that yes, most of Asia has the CC or at least the CT at the very least,.
Diane, I think at the very best the CT will just be a crap shoot if these tests prove as reliable as most think they are. That said, they aren't 100% reliable. When they first began the tests they were only 85% accurate.
I'm sure by now they've narrowed that gap, but I'd hate to suggest that anyone base their decisions solely on a test that could be wrong, or on a predictive that, especially where CT's are concerned, leaves so much to be desired.
I'd be more inclined to say that it should be used to cull out those less likely to cure, the TT's and that if you tested as a TT, I'd then repeat the test, and if it read the same, then I might suggest waiting for the PI at the very least would only make sense. If a geno 1, even with the PI the odds aren't stellar, but if you could go from 5% success to 55-75% success, or there abouts, it would mean you were upping your chances so significantly that it would hardly make sense not to.
The only exception here might be were one at stage 4....and then, at that point just being on SOC and staying UND for the year would give your liver a well deserved rest, and allow some repair to transpire, which might make one more able to then succeed with a PI. Remember the PI's may still be a year away, or more. No one is really setting dates anymore, since the date is years beyond where it expected to be as is. In other words in late stage, even keeping one in a holding pattern has some advantages.
BTW, one member in late stage not only SVR'd but has had major fibrotic reversals, so not all late stagers are doomed to fail or be permanently impaired.
If you are already UND there's no point in not continuing, and I think your point is worth considering, insurances aren't as well educated as geneticists, so until they all get up to speed they wouldn't understand the reasoning necessarily.
That said, I think what Willing said makes the most sense. If you were stage 1 or 2, I would have advised you to wait for the PI's at least, and were you also TT I would have said wait for the polymers as well, only because again, doing it right the first time makes the most sense.
It's a hard sell for those who haven't undergone tx, but for my money, I'd do any and EVERYthing before and during, to make sure the first shot worked.
As to the issue with not using the PI on the CC's chatter...I don't necessarily agree with the prevailing view there, only because the PI does make a difference in one study, albeit not always a stellar one.
As to the Egyptian study, I don't think their stats can be applied in this instance.
My reasoning is, none of the folks in that study were Egyptians. They were
immigrants to Egypt, and I'm assuming most were from Asian countries as this is where most Arab states import their immigrant labor from. They were all Type 4's, also indicative of asian decent. Ergo, we cannot extrapolate that those in the study were all just lucky African's with aberrant genotypes. The true African's, the Negro races, are the ones that rarely have the CC or CT combo.
The Alinia result, in my humble opinion were as good as they were not because Alinia is so remarkable but because the physician who conducted the study policed his test subjects daily, and made sure he got 100% compliance. 100% compliance will always result in better stats, I'm not surprised they saw the bump particularly with that genotype, given that yes, most of Asia has the CC or at least the CT at the very least,.
Diane, I think at the very best the CT will just be a crap shoot if these tests prove as reliable as most think they are. That said, they aren't 100% reliable. When they first began the tests they were only 85% accurate.
I'm sure by now they've narrowed that gap, but I'd hate to suggest that anyone base their decisions solely on a test that could be wrong, or on a predictive that, especially where CT's are concerned, leaves so much to be desired.
I'd be more inclined to say that it should be used to cull out those less likely to cure, the TT's and that if you tested as a TT, I'd then repeat the test, and if it read the same, then I might suggest waiting for the PI at the very least would only make sense. If a geno 1, even with the PI the odds aren't stellar, but if you could go from 5% success to 55-75% success, or there abouts, it would mean you were upping your chances so significantly that it would hardly make sense not to.
The only exception here might be were one at stage 4....and then, at that point just being on SOC and staying UND for the year would give your liver a well deserved rest, and allow some repair to transpire, which might make one more able to then succeed with a PI. Remember the PI's may still be a year away, or more. No one is really setting dates anymore, since the date is years beyond where it expected to be as is. In other words in late stage, even keeping one in a holding pattern has some advantages.
BTW, one member in late stage not only SVR'd but has had major fibrotic reversals, so not all late stagers are doomed to fail or be permanently impaired.
I asked my doc about the IL28 testing and he said that it is already accepted by the mainstream that this testing will have to be incorporated into routine procedure. He also does not foresee difficulty with cost justification, based on the savings made by preventing treatments with low chance of success.
He did however caution that even the CC's have a 20% failure rate with SOC so there's more to it than just the genetics. (Dunno where he got that figure.)
dointime
He did however caution that even the CC's have a 20% failure rate with SOC so there's more to it than just the genetics. (Dunno where he got that figure.)
dointime
upbeat: the genetic variation only affects effectiveness of IFN-stimulated pathways (though *how* it affects them isn't at all clear yet). Since the 1st gen PIs critically depend on ifn to eliminate PI-insensitive mutants , if you have the wrong IL28b sequence you are likely better off waiting for a multiple-PI cocktail (eg a polymerase and protease combo) that will be far less reliant on IFN mop up.
desrt: good points; it seems reasonable to expect for-proft ins. cos will do what they can to minimize losses from coverage of genetically-challenged insured. Another, shorter term, question is the patenting of the relevant DNA. I believe Schering and Mc.Hutchison hold patents on the rs12979860 SNP. Is the reason 23andme tests rs8099917 and Labcorp tests rs12979860 due to royalty payments ?
Here's the 23andme blurb:
https://www.23andme.com/health/Hepatitis-C-Treatment-Response/
desrt: good points; it seems reasonable to expect for-proft ins. cos will do what they can to minimize losses from coverage of genetically-challenged insured. Another, shorter term, question is the patenting of the relevant DNA. I believe Schering and Mc.Hutchison hold patents on the rs12979860 SNP. Is the reason 23andme tests rs8099917 and Labcorp tests rs12979860 due to royalty payments ?
Here's the 23andme blurb:
https://www.23andme.com/health/Hepatitis-C-Treatment-Response/
Wow! You were UND by week 6 and you're worried about what your insurance is going to do? It seems obvious to me that they are going to want you to keep going with SOC because it must be working. If you were like pcds, so close yet so far away by having PCR in the 300s at week 12, the insurance might be an issue. I'm waiting on my 12 week PCR results right now. Since I dropped from 6mil to 120,00 by week 2 and 2,000 by week 4, my doctor hasn't even mentioned the possibility of my stopping tx. I'm wondering if going to LabCorp to get that test, if I'm not UND, and say it came back that I was CT, would that indicate that extending to 72 weeks would work for me as opposed to stopping and waiting. I have personal issues compelling me to get this over with as soon as possible.
What do you think?
Diane
What do you think?
Diane
kind of makes me wonder at this point.
Everyone I share my tx response with so far thinks I am doing great.
Mt. Sinai , Weil Cornell Medical , Romark ect....
Now this IL28b pops up and I am to believe I might be TT CT and of poor response ?
The Romark trial with GT4 and Alinia in Egypt that produced 79% SVR are all CC ?
I thought the african continent has mostly TTs.
it is important to know what the insurance cos do with this.
for example i had a 3.08 log drop by wk4 , UND by clinical standard PCR wk6 + 9
and very very likely wk12. According to that I am good to go for 48wks.
So if I stop now on my own based on more sensitive VL tests and IL28b
who knows if they would pay to retreat in the future let alone paying for PIs ?
Doing this the first time and I am not sure how insurances handle this.
any ideas ?
Everyone I share my tx response with so far thinks I am doing great.
Mt. Sinai , Weil Cornell Medical , Romark ect....
Now this IL28b pops up and I am to believe I might be TT CT and of poor response ?
The Romark trial with GT4 and Alinia in Egypt that produced 79% SVR are all CC ?
I thought the african continent has mostly TTs.
it is important to know what the insurance cos do with this.
for example i had a 3.08 log drop by wk4 , UND by clinical standard PCR wk6 + 9
and very very likely wk12. According to that I am good to go for 48wks.
So if I stop now on my own based on more sensitive VL tests and IL28b
who knows if they would pay to retreat in the future let alone paying for PIs ?
Doing this the first time and I am not sure how insurances handle this.
any ideas ?
hey, oh boy, just wrapping up a final mail check before taking off and voila'
well, Bali if you had both of the wrong markers I would definitely regroup with a PI if you weren't UND at 12 wks. (actually I'd do it sooner myself).
It certainly won't help you much if you have one of each, because then tx could work for you, but if you had both of the risk alleles then the PI's would become far more needed.
If I was stage 1, I'd even be tempted to wait until the polymers or things like Bristol-1 were also in the mix. Of course, one stusy I read yesterday was voicing how slow some geno's were to revert to wild strains...so the bottom line is going to be yes, the tx. landscape did just get a whole lot more complex.
Note, even the G2s and G3's saw a 30% fall off with the TT combo.
Now translate to G1 let's say, and we can see where 50% overall SVR would mean TT's probably all have single digit odds. Kinda makes one take pause, yes?
Bottom line is, the tx that makes sense is one that has a good chance of working.
I'm not sure what the stats will be when they go back and look at who relaspsed, but they may be even higher than the ones in the study. I'd welcome a relasper genetic followup.
The study numbers show chances of SVR are cut in half with TT....but apparently it isn't worse for the G1's than the G4's.....G4 numbers are the lowest.
AS to PCSD's remark,
well it appears your genotype is what you need to factor in because with some, G2 and G3 what is affected most is the RVR but the SVR is not that different, so if that type then you should be OK with the SOC. You won't get the RVR with those types, but hey, the SVRs were good...and bottom line for that group is SVR is what really matters.
Sure wish HR were around to tell us his take on all this...I'm not really comfortable prognosticating on things I'm not trained in.....not surprised that labcorp got to this first though...HR where are you???.
More musings: think with these kind of drops in sucess given the wrong genes it only makes sense to wait for the PI's at the very least if you have the dread TT combo...you'll be picking up about the same percentile advantage with the PI that you are losing with the bad genes, hopefully.
NOW the 64 dollar question remains what role do the genes play in the efficacy of the PI/SOC regime....and of course until those numbers come in we won't know for certain how much advantage the drug really creates, but my guess, based on just the raw rates so far with just SOC is that the CT's are fairing somewhat better. The CC were probably what had the original SOC SVR numbers up so high to start with, so there may not be as big a difference there....(which may be why the conference chatter was "maybe we should let the CC's stick with SOC") but what will be really great is if the TT stats moved at all which I think I heard was the case and why the PI's might be reserved only for them (again just ASSLD chatter don't quote me).
Of course, this is just the tip of the iceberg, we aren't even talking about what role PI resistance might play, or how soon tests that will detect those mutations will be offered to us. grin....I know...silly wabbit...wishing for moons again...but the tests are there, I just hope someday they'll not stop at IL28, I hope they'll take the DNA, come in and say "you have a wild strain" before they leave you on drugs that won't help for that extra year or 2.
Maybe it will happen, I mean, after all...it isn't just the patient who suffers toxic drugs...it's the wallets of the providers paying for that usless treatment, so who knows, maybe we will get the testing...who knows. Also to their advantage in that getting those with wild strains off the tx sooner will mean less chance of some really nasty super bugs getting to HULK status.
to be continued...
well, Bali if you had both of the wrong markers I would definitely regroup with a PI if you weren't UND at 12 wks. (actually I'd do it sooner myself).
It certainly won't help you much if you have one of each, because then tx could work for you, but if you had both of the risk alleles then the PI's would become far more needed.
If I was stage 1, I'd even be tempted to wait until the polymers or things like Bristol-1 were also in the mix. Of course, one stusy I read yesterday was voicing how slow some geno's were to revert to wild strains...so the bottom line is going to be yes, the tx. landscape did just get a whole lot more complex.
Note, even the G2s and G3's saw a 30% fall off with the TT combo.
Now translate to G1 let's say, and we can see where 50% overall SVR would mean TT's probably all have single digit odds. Kinda makes one take pause, yes?
Bottom line is, the tx that makes sense is one that has a good chance of working.
I'm not sure what the stats will be when they go back and look at who relaspsed, but they may be even higher than the ones in the study. I'd welcome a relasper genetic followup.
The study numbers show chances of SVR are cut in half with TT....but apparently it isn't worse for the G1's than the G4's.....G4 numbers are the lowest.
AS to PCSD's remark,
well it appears your genotype is what you need to factor in because with some, G2 and G3 what is affected most is the RVR but the SVR is not that different, so if that type then you should be OK with the SOC. You won't get the RVR with those types, but hey, the SVRs were good...and bottom line for that group is SVR is what really matters.
Sure wish HR were around to tell us his take on all this...I'm not really comfortable prognosticating on things I'm not trained in.....not surprised that labcorp got to this first though...HR where are you???.
More musings: think with these kind of drops in sucess given the wrong genes it only makes sense to wait for the PI's at the very least if you have the dread TT combo...you'll be picking up about the same percentile advantage with the PI that you are losing with the bad genes, hopefully.
NOW the 64 dollar question remains what role do the genes play in the efficacy of the PI/SOC regime....and of course until those numbers come in we won't know for certain how much advantage the drug really creates, but my guess, based on just the raw rates so far with just SOC is that the CT's are fairing somewhat better. The CC were probably what had the original SOC SVR numbers up so high to start with, so there may not be as big a difference there....(which may be why the conference chatter was "maybe we should let the CC's stick with SOC") but what will be really great is if the TT stats moved at all which I think I heard was the case and why the PI's might be reserved only for them (again just ASSLD chatter don't quote me).
Of course, this is just the tip of the iceberg, we aren't even talking about what role PI resistance might play, or how soon tests that will detect those mutations will be offered to us. grin....I know...silly wabbit...wishing for moons again...but the tests are there, I just hope someday they'll not stop at IL28, I hope they'll take the DNA, come in and say "you have a wild strain" before they leave you on drugs that won't help for that extra year or 2.
Maybe it will happen, I mean, after all...it isn't just the patient who suffers toxic drugs...it's the wallets of the providers paying for that usless treatment, so who knows, maybe we will get the testing...who knows. Also to their advantage in that getting those with wild strains off the tx sooner will mean less chance of some really nasty super bugs getting to HULK status.
to be continued...
This Genetic test seems to relate to standard TX. I wonder if this also applies to the new PI'S?
"I believe ins cos are legally prohibited from using genetic information to deny coverage"
This is the other reason why this simple little ad is so important. Sure, it's great that HCV tx is finally starting to come out of the dark ages and people will be able to make truly informed decisions.
But HCV is just a tiny part of the picture. Genetic testing is the '800 pound gorilla' in the corner everyone has either been trying to ignore or (I"m sure in the case of the insurance cos.) trying frantically to figure out how to work into the equation.
This is the tip of the iceberg that will change healthcare in our country more than all the wrangling and posturing we've seen lately about "reform".
This is the other reason why this simple little ad is so important. Sure, it's great that HCV tx is finally starting to come out of the dark ages and people will be able to make truly informed decisions.
But HCV is just a tiny part of the picture. Genetic testing is the '800 pound gorilla' in the corner everyone has either been trying to ignore or (I"m sure in the case of the insurance cos.) trying frantically to figure out how to work into the equation.
This is the tip of the iceberg that will change healthcare in our country more than all the wrangling and posturing we've seen lately about "reform".
I find it never hurts to have too much information with Hep C only too little.
The IL28b might become important depending on all other factors.
For example should my TMA Quant come back with a low viral load.
I would retest that TMA @wk12 but
I would feel a lot better knowing I have the CC geno.
You just never know. What if all of a sudden some serious sx pop up ?
You constantly weigh your options.
Should I still be detectable even in lower numbers and have the TT geno
I would propably think retry with PIs.
It is another piece of the puzzle at any given time !
Just concerned about insurance issues.
My plan is to gain as much information I possibly can and go meet my
highly regarded hepatologist for advice @wk12 for future tx decisions.
The IL28b might become important depending on all other factors.
For example should my TMA Quant come back with a low viral load.
I would retest that TMA @wk12 but
I would feel a lot better knowing I have the CC geno.
You just never know. What if all of a sudden some serious sx pop up ?
You constantly weigh your options.
Should I still be detectable even in lower numbers and have the TT geno
I would propably think retry with PIs.
It is another piece of the puzzle at any given time !
Just concerned about insurance issues.
My plan is to gain as much information I possibly can and go meet my
highly regarded hepatologist for advice @wk12 for future tx decisions.
Now that I know I am a slow responder to SOC, this lab test is not for me. It would have saved me some grief.
Interesting - I think that's cheaper than the $429 for the 23andme 'health edition'. I believe ins cos are legally prohibited from using genetic information to deny coverage - but given that you're already on the roller coaster how would knowing CC, CT or TT change your planning?
called Labcorp $360 ( $300 if client) 5-7 days
already have lab requisition and am ready to go
only concern I have 12wk meeting coming up in approx 3 weeks.
If I have the CT or TT combo can the insurance co. see that as a reason
not to continue tx or something ?
Whatever happens you can`t change your genes.
already have lab requisition and am ready to go
only concern I have 12wk meeting coming up in approx 3 weeks.
If I have the CT or TT combo can the insurance co. see that as a reason
not to continue tx or something ?
Whatever happens you can`t change your genes.
agreed this is definitely big news. I believe this is the first available opportunity to test IL28B rs12979860 status. Of the three "personalized genomic" services I looked at (Pathway Genomics, the ones who were going to start selling kits in Walmarts, Navigenics and 23andme) only 23andme seemed to offer anything close, and they report results for a nearby SNP (rs8099917). This SNP also appears to be a significant factor
http://www.ncbi.nlm.nih.gov/pubmed/20060832
http://www.ncbi.nlm.nih.gov/pubmed/19749758
but is not the rs12979860 SNP investigated in the original Ge'2009 report that started all the hoopla
http://www.ncbi.nlm.nih.gov/pubmed/19684573
(and I have some bias that results will be more reliable from a company like Labcorp that has been handling nucleic acid testing for a long time).
No idea what Labcorp will charge, but for anyone for whom responsiveness to ifn is a key planning consideration it seems there's now an option to finding out if you have the lucky CC genotype. But note that interpretation is still very much an emerging field. For example,
"Among patients with RVRs (61%), the IL-28B genotype was not associated with SVR (>70% for all IL-28B genotypes). "
http://www.ncbi.nlm.nih.gov/pubmed/20621700
(worst part about this, from a patient perspective, is the increased complexity of the HCV alphabet soup - names of viral proteins and new drug candidates were bad enough but SNPs are as bad as phone numbers)
http://www.ncbi.nlm.nih.gov/pubmed/20060832
http://www.ncbi.nlm.nih.gov/pubmed/19749758
but is not the rs12979860 SNP investigated in the original Ge'2009 report that started all the hoopla
http://www.ncbi.nlm.nih.gov/pubmed/19684573
(and I have some bias that results will be more reliable from a company like Labcorp that has been handling nucleic acid testing for a long time).
No idea what Labcorp will charge, but for anyone for whom responsiveness to ifn is a key planning consideration it seems there's now an option to finding out if you have the lucky CC genotype. But note that interpretation is still very much an emerging field. For example,
"Among patients with RVRs (61%), the IL-28B genotype was not associated with SVR (>70% for all IL-28B genotypes). "
http://www.ncbi.nlm.nih.gov/pubmed/20621700
(worst part about this, from a patient perspective, is the increased complexity of the HCV alphabet soup - names of viral proteins and new drug candidates were bad enough but SNPs are as bad as phone numbers)
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.
