IL28b genetic testing, what, when, where and how

[merryBe]

genetic testing...the new buzz word.  IL28b, the gene that tells the tale.

Find out if you have the genes to fight this disease.

Find out if your body will work with or against the chemo drugs by having one simple test, this could revolutionize our treatment decisions.

IL28b works on the Interlukin lambna, a cytokine with antiviral components.

I'm still waiting to see when they work out the kinks and start offering testing across the board.

This is a thread I'd like to see get stuff added to as it comes up.

here's a good primer for thos not yet familiar.

http://hepatitiscnewdrugs.blogspot.com/2010/03/il28b-gene-variation-predicts-response.html

If anybody knows where testing can be obtained post it here please.
What's the cost?
Did your insurance approve the test?
Does your doctor want to see testing etc.

Post any and all relevant info please.

mb

[LadyAlaise]

When my liver doc told me of newer treatments available over a year ago I said ok, I'll do it. It was a year of hell no bones about it. I have state and fed healthcare so thankfully I did not have to pay for tests or the medicine (was on triple therapy; Pegylated Interferon, Riboviron, & Teleprevir-did 48 weeks) my ILB28 gene came back CC thankfully. I was told by my doc that one apparently inherits one letter from one parent and the second letter  from the other parent. My having CC makes me wonder what my parents gene is...?
I would have done only 6 mo. of treatment originally partly I think because of me being CC, but I had a very adverse reaction to Teleprevir and due to that had to extend to the full 48 weeks.
When I started my viral load was 17,540,000; from week 4-48 it was undetectable via blood tests; I go for a follow up appt next month I am very optomistic that it will be good news :)

[curiouslady1]

Someone was interested in how much this test cost.  The company LabCorps quoted $360 for the test 480630 IL28b with a turn around time from the date of receipt of the sample of 5 days.  

[merryBe]

actually Arup forwards all their IL28b's to labcorp...at least they did as of last week.

when I called Labcorp, they wanted a different type draw then ARUp however...grin

just in case we weren't confused enough!!

Basically just tell the lab tec you need 2 lavenders...(not the one lavender that ARUP asks for.

Be sure and tell the lab tech about the viability window...it's 72 hrs or one week in best circumstances, but no freezing.


This time of year that means it must be overnight, and protected from freezing in some areas.

I have no idea why labcorp is making everyone who wants the test to mail via ARUP, it makes little sense to me why we should fly it to Utah when it isn't even tested there, but that's the way the Northwest is doing it
, given the time window it seems silly, but if they goof it up, you'll just have to start over at their expense I guess.
I hope that stretching that window does not compromise results.

mb

[EyesofBlue55]

Had the test a month or so ago.My insurance did pay for it BC/BS.I am a CC also.Will be talking about this to my  dr on the 4th.cindy

Labcorp offers the test

[JulieAnnPhD]

There are two reference laboratories now offering the IL28B test.  The first is LabCorp, it offers a single SNP polymorphism.  This was identified first in the Ge et al. 2009, Science article (you can look it up on PubMed).  The second reference lab is ARUP offering two SNP polymorphisms.  The second has been detailed in quite a few articles.  The SNPs (single nucleotide polymorphisms) are actually 3,000 bps upstream of the IL28B gene and associated with clearance of Hepatitis C virus.  As mentioned the favorable genotype is CC for the rs12979860 SNP and TT for the rs8099917 SNP.  This is not a diagnostic test alone, but rather the results can be used in conjunction with other diagnostic factors such as HCV viral load, genotype, age, sex, ect.  to determine whether or not a patient will respond to HCV therapy.  

[uncledudeness]

I just got the results of my test back this week.....I am CC....wooohooo.....so now I will start SOC and go into treatment with a high confidence factor.

I got the test done for free, as I was screening for the GI-5005 trial, which requires the DNA test. Needless to say that I did not qualify for the trial, due to my late stage. But, it was a way to get the test done for free. My Hepa said that it isn't covered by insurance yet, which goes to the question: will insurance co's pay for treatment if a patient is discovered to be a TT genotype?  hmmmm, we'll see.

((( as i said in a previous post, screening for the GI-5005 trial is a good way to get the test done for free )))

i came across this thread and thought i would add my experience with the test. hope it helps.

[Cory255]

HCV empidemics.  I have no clue what that is.  Thanks for the information.  

[merryBe]

this thread is continued on another thread:

http://www.medhelp.org/posts/Hepatitis-C/From-Merrys-IL28b-posting/show/1297649


Cory, long ago there must have been HCV epidemics... (not that today there isn't) since 1 billion people have one form of infectious hepatitis or another...1 in 6 people)

but long ago there was probably an epidemic which gave certain populaces immunities at the genetic level. Meaning their response to whatever form the disease was in then left them with permanently altered alleles in their genetic code. This interleukin 28 b code change means those with the altered genes have good little cytokines (proteins) that help the immune responses...and ergo we stand a better chance at responding to drug therapy, and of overcoming mutations that may develop as a result of treatment with the changes.  The changed alleles are the CT and CC combos, the TT is the original coding. Evidently the epidemic did not hit the African continent, and this is why most of African decent have the TT combo and thus have less success treating than those whose genes adapted due to past exposures.
    The IL28b test will help a patient and doctor determine if a PI, or other more powerful drug is really needed. (each added drug does entail additional risk) and it will also help patients to determine whether it is better to cut ones losses (discontinue tx) and live to fight another day (when better treatments are available.  This will be particularly useful to those in the TT category who are slow responders...kowing that genetically your chances have just dropped to say 5%, not the 50% first promised, might help some folks to make better treatment decisions AND, assuming that retreatment becomes more of an issue (insurances are already balking at treating more than once), it would make sense to really look at ones chances with a given regime very closely before proceeding.  I would liken this to giving someone with 20/400 eyesight a 20/20 correction. If the genetics are accurate predictors then we need to taylor treatments to work with the persons genes and not against them.

Cory, all the drugs we take can have similar issues. The day is coming when your tx regime will be tested on your own genes in a petre dish to see if the tx will help you or be toxic and kill you...and it will be done before you even take your first pill or shot!! Although we have lots in common, even little differences in our individual coding can spell the difference between life and death.

[Cory255]

Genes are considered to be your hereditary information, it contains information about your hair color, height, etc, etc.  Genes ultimatley detemine what you will look like.  These very short segments tie into being part of your DNA.  Your genetic information is inside your DNA which is shaped like a Double Helix.  Inside this double helix in a very particular place, your genes make up a spot on your chromosomes.  There are dominant and recessive genes that play a big role in detemining your actual traits.  Let's say hypothetically both of your parents have brown hair.  You could have blond hair if both of your parents pass down the recessive gene.  You would have brown hair if at least one parent passed down a dominant gene.  The human body has an estimated number of genes close to 25,000.  Your genetic combination is practically an unlimited amount of possibilities from your parents.  There are 8 million possible different combinations.  Your genes determine what you will look like.  Genotype can be referred to as someone's genetic re-structure.  Phenotype is someone's personal characteristics.      

merryBe: What's this IL28b testing all about?  I've never heard of it?  

[Bali05]

that`s great .
only have one question , can the insurance company decide not to pay
for treatment should this test be of unfavourable  result?

[Gee704]

LabCorp just announced testing for the IL28b gene.

Here is a link: http://people.genome.duke.edu/~dg48/L8464-0710-Service-Announcement-FINAL.pdf

[Bali05]

thank you for all the information
see you when you get back

b

[merryBe]

sorry but I'm really busy getting ready to leave town...just a quick check and we can talk more when I return...yes ALA helps because the fat slows the rate at which things absorb.
So even having a little oil on your rice (brown preferably) can mean you won't develop insulin resistance, assuming you treat all your carbs this way. (of course volume can negate that). And watch out for weight gain...ouch.

the best ALA is R-Ala, long discussion so we'll save it..
The hcv has shown that sugar promotes more virons ergo a higher VL but your cannot starve the virus away. You might get a little faster drop in log in ketosis, but ketosis has it's own issues and dangers for liver people...higher oxidation, lots of issues...long topic.
I'd opt to add fat to meals to get better riba absorption, sooner you get to steady state there the sooner you'll get VL down, but you could do ketosis if your VL wasn't dropping...
I would definitely say calorie restriction early on would be a good idea, again, less sugar means more INF staying in the system longer.

However, things are again not cut and dry. The real issue is that the interferon and insulin cancel each other out somewhat...the virus requires more natural INF be made, and then this INF, or what you inject, lowers insulin so the body trys to make more and more...and then the cells say enough already and shut down their receptors and won't let insulin into the cell... if you have IR it makes sense to do both dietary AND pharma to get it down.
Trials with oral IR drugs on board had higher rates of SVR across the board.

this is a long discussion...
and starving cancer cells is also not cut and dry either.
Do some tumors shrink when starved, yes, but some eat more voraciously into healthy tissue when starved because if the food isn't coming to them they go after it faster...not all tumors are created equal...there are lots of different kinds and they behave differently.

there's a new therapy for instance, called IPT, where insulin is injected into tumors...this makes certain tumors super hungry and greedy for sugar...but in overeating they then take up a lot more of what is in the blood than normal cells, and so if the blood is awash in chemo when you shoot them with insulin then the tumor takes up far more than the other cells...and this then shrinks the tumor post haste, and also makes the magic bullets of the chemo go more exclusively to where they are needed, and less goes to the normal cells..ergo the folks doing this need less meds, and also get far less sick from the chemo.......in theory whe the polymer's come out they will target the virons protein core with a similar modus operandi. The day is close when we will have these magic bullets that either target only the cell intended, or they soften up the cell for what's coming next. Both these methods have dozens of trials going on right now so in a few years the cures will not do the harm they currently do.

as to too much protein, again not simple...the answer is everything is potentially toxic when there are less cells to process it. We need fats, and some are quite good at slowing fibrosis and protecting against oxidation which leads to HCC..cancer....but too much can lead to fatty liver and more oxidation so amounts and types of fats is crucial to bone up on...with protein, well damage to the kidneys can be pronounced, they are more sensitive than the liver even, but liver patients are more prone to issues with the kidneys BECAUSE the liver is compromised already.  This is why you want to keep an eye on your salts, your clearance rates, albumin, and so forth.  Remember also that quantities have more to do with what becomes toxic that the items themselves as a general rule. Meaning drugs especially,less is better. Many things can be tolerated but their tolerance is keenly linked to quantity. It also has to do with how many items you have taxing each cytochrome.
Cytochromes process the drugs, and we have limited amounts of them as scarring and fibrous material replaces healthy tissue.
This involves studying the P450 research and is very complex as well.
If you tend to have a lot of atypical reactions to drugs you will need to find a good hepatologist and pharmacist who can keep a close eye on what you take. You can often switch one drug to a different classification or family, and use up a different set of cytochromes, and so still recieve treatment for a condition without shutting down your liver but it varies from person to person what they can tolerate. Especially if the kidneys are showing any sign of sybiotic failure you'll need to be watched carefully.
As to protein itself, well the general concensus seems to be that 2 or 3 ounces several times a day if far better than sitting down to a ten oz. steak at night.
Again, smaller amounts more often allows for less stress. A stressed liver won't repair as well as one that is constantly being strained.
If you are having difficult digesting (I'm not sure what stage you are) then I would suggest Sam-E, and some of the other things that HR has recommended. HR, Hepatitis Researcher, is a doctor who visits us in here sometimes.  If you go up to the HEALTH PAGES  and scroll down to the page I started call "HepResearcher ( Doctor) on various topics it will take you some of his threads...click on his profile and you can read all his responses....also you can go the Gauf journal's and see the regime HR recommends.

Back to protein...Think of it as your car...when does it seem happiest...when it is pulling itself up a long hill all day long, or when it is coasting on level or downhill grades.....same with us...so a steady supply of a few calories all day not only will make us healthier, and less prone to insulin issues, but will allow our liver to focus on healing and making healthy cells more often.
You can not eliminate fat or protein and make new healthy cells.....BTW...
as to proteins, I avoid all shellfish, it is very hard for a sick liver and for even healthy kidneys to deal with. I eat far more white than red meat..and fish, cheeses, tofu, mix it up...stick to.low iron diets, they are best for liver people, and I add nuts to my carb meals....like to breads, morning oatmeal, whole grain cookies, granola bars, nut breads, I bake them all...that way I can control the fat and sugar content (use stevia, and agave nectar, and you can cut the sugar to 1/4 the normal amount without noticing any taste difference).  Also, get your iron checked an if high read up on my iron threads in here.

NY girl did the ice cream diet, but she may have had no insulin resistance, and had the right genetics. Some folks are lucky, and their good genes will get them through tx to SVR regardless, but that's not the case for many.  If your genetics, your interlukin  28B is messed up, that approach could easily make the difference between clearing and not.
Look, I wish I'd known this stuff before treating, the truth is, I know people who have cleared AFTER adjusting their diets and sugars....it may not have been the ONLY reason they SVR'd, but dealing correctly with the diet could make the difference, several studies do point to this.  I sure wish I'd known sooner about the sugars...and, it's too soon for IL28b testing to be standard...so the best bet is to play it safe...no one want to repeat this tx....NO one.
Also, you can't use the A1C while treating, it won't be accurate, you need a HOMA to discover how bad your IR is if already treating.
Have you read Cowriter's journals on all this??

I'll be happy to take up these topics in greater detail when I get back from our trip...but I'm going to be gone for a couple weeks.  Check you PM's I've left you a link.
see you when I get back.

mb

[Bali05]

thanks,
did not know lower blood sugar makes more interferon available only that insulin
resistance is a tx response problem.
I find ALA with proper diet&excersise does a terrific job in lowering glucose.
I have come across cancer patients that believe in "starving" the cancer cells of sugar
and also have come across a number of Hep C people that say the virus loves sugar.

Do you believe HCV loves sugar ?

I mean NYgirl SVRd on an ice cream diet.

When you put your body into ketosis you change the metabolic response.Would
that effect the virus positive or negative in any way  ?

I understand that when your liver function is compromised that too much protein
and fat can cause problems.

I guess a low glycemic diet is better either way since it is closer to our evolutional
diet.

[merryBe]

to further answer your question, and to do so with some deference to the size of the connundrum I will also include this reference. At first I wasn't going to, as someone will probably take me to the woodshed....but this fellow is pretty smart and makes some good points...the debate about whether certain carbs are bad for us, especially as liver patients, is far from over.'

http://blogs.myspace.com/index.cfm?fuseaction=blog.view&friendId=89203471&blogId=536199261

[merryBe]

Robert, both actually is the true answer. You may recall that we had a doctor in here for a while, who still occasionally pops in....HR....and he clued us to the lipid part of the equation so I've been trying to learn more about this ever since.
Unfortunately, even the researchers don't all concur so where does that leave us!!
I've had to just do the best I can to ferret out truth from supposition based on how much real science backed up each approach but truthfully, when the scientist themselves are still walking around the elephant trying to figure out what it is none of us can expect to fully comprehend this thing now can we.

Dointime...yup, well...plenty to cause psychosis in that group without any meds...
too bad we can't give it to the taliban...AT LEAST THEN THEY'D HAVE AN EXCUSE FOR THEIR INSANITY
.I see your point and raise you one on the do no harm front, but the truth is that outcome probably won't be achievable short term as both drugs in concert has been the only time good SVR rates have been reached. (10-15% for each drug separately).
Where hope may lie soon, is in the vaccines and pills that aide and/or cause VEVR...thing like Bristol-1 or inovios new vaccine...these lower VL in hours not days or weeks...knocking out 98% of it, and making SOC a mop up...which may mean lower doses, and/or less time treating.  My hope is to see the docs really move on these new technologies but time will tell.

[merryBe]

If memory serves I believe the general thinking was that the overweight should consider this, as the theory that maybe the virons hide in fat stores is still floating in the breeze.
I'd tend to wonder about that, since many large people clear, and many thin do not.
Logically, we can never remove all fat, so were that true who would ever SVR.
I do think weight loss is smart for those with NASH, regardless but for other obvious reasons.

As to fat and protien vs carbs I think the issue here has more to do with the glycemic index.
All food turns into sugar, regardless of it's source. What's operative is high sugar or high carbs, if they have the wrong glycemic profile will absorb too rapidly making the blood sugars go up, and thus interfering with how much interferon stays in the system.
However, since part of the issue with liver patients has to do with the build up of toxins one wants to keep a good probotic profile going as well...meaning we need to keep our systems moving and carbs, some carbs, are full of fiber and moisture as well and ergo help us to stay regular and keep ammonia and other toxins from building up.
Ergo, I don't think carbs should be eliminated, but I do think a good regime is a well balanced diet, with plenty of fiber, low glycemic carbs...(brown vs. white rice, wheat vs. white breads, low to no sugar, lots of veggies and some fruits.) fruits are a better desert than straight sugary stuff, but should be eaten in small amounts.

There are just too many vitamins and minerals one can become deficient in without that balance Bali...and a high protein diet puts undo strain on kidneys and liver. Liver people are better served by small amounts of protein (2 or 3 oz.) several times a day, as opposed to one large serving at dinner...mostly because the liver has to work harder to convert proteins.
Fat, well the right fats are showing some fibrotic reversal, but we have to balance that info with realizing that too much fat is rarely a good idea.

All that I said above need to be taken with a grain of salt,

since verdicts are clearly out on much of this thinking. I'm reminded that so many things have been said to improve outcomes (including statins) that its enough to choke a horse.

for my money, I'll bet when they do factor in the genetic profiles using the IL28b testing they may find that that had far more to do with who SVR'd than any adjunct drug some folks were on. But that's just a hunch, and nothing more.

As to the diet however, I think far more is known...I try to use "The Zone" approach.
The zone basically allows you to eat what you want, but in the right proportions to achieve that 30% from each food source model. i.e. 30% of calories from protein, carbs, and fats.
Note, that's 30% of calories from each source, by caloric value, NOT by weight or volume.
so don't eat sticks of butter.
The main reason I think this approach makes the most sense is it allows for lower blood sugars throughtout each day, which means more INF to fight the HCV remains available...AND the organs don't get as worn out.

Also it's an easy diet to follow...requires no calorie counting or weighing of food once you get used to how big the portions need to be it's pretty much brainless...one can do it in your sleep. Plus it allows for plenty of food and lots of snacks so no one feels starved or hungry, ever.
Most diet make you cut out all fats...no more avacados, or creamy anything, this one doesn't do that, and so long term folks can stick to it and make it a lifestyle much easier.
Plus, most folks who do follow it don't end up advancing from type 2 to type 1 diabetes so for my money that's worth the price of admission alone.

If you haven't read it, it's called "the Zone" by Dr. Barry Sears, and it's been around for 20 years so lots of time to see the results. There are good forums full of Zoners to help folks get going with it as well.

mb

[dointime]

bill1954 - yes that's the link - thanks for finding it.  Lots of good info there.

MerryBe - yes, I want to do the il28 test too but not until I'm getting ready to treat.  I'm hoping that the price will come down by then or my local doc will get it on his to do list.  I'm bending his ear about it at the moment.

I feel that interferon is so long term toxic that I'd be crazy to subject myself to another dose if I'm genetically predisposed for it to fail.  And forget about the riba too.  I think the military must have developed that to drive soldiers psychotic.  So I won't be exactly unhappy if I end up with a tx which is a combo of the new drugs minus SOC.  I'm really not looking to pick up any more collateral damage than absolutely necessary from my next tx.

dointime          

[Bali05]

was wondering what your opinion on this is
what do you think happens in regards to the virus when you put your body into
ketosis burning mostly fat and protein for energy instead of carbs ?

b

[Diane12855]

I almost posted when I saw everybody's response that you had lowered your lipid profile way lower than normal, because I thought I had read that before, but I figured you'd get on here and explain things much better than I could.

You didn't disappointed.... never do.
Diane

[RobertBeWell]

"boy, now here's a good example of folks reading into what I said. "

Yep, makes a different story when you supply some context. Your original post (as a reply) sounded like you were raising lipid levels to alter your genetic makeup to be more favorable to therapy.

Thanks for the links. It's interesting science, to be sure.

[merryBe]

yes, thanks for that, I guess where I was going with this is hoping to hear if some docs might start testing.
I've known about this for a year, but it seem high time some eggs should be broken, we're staving for an omelet.

It might help if we the patients started pushing for it...
I mean, I know it's expensive, and I know we live in the new age of "rationed care"..the D. Wernick buzz word again this week...but still

the benefit would outweigh the risk. WHy
because with the good genes you'd treat, and with the bad ones you wouldn't, unless you had a PI on board at the minimum.

It turns out they think Africans have the wrong genes because the outbreaks thousands of years ago weren't on their continent, and ergo their genes did not create an adaptive response!!
For african's ergo, knowing their gene profile is most important, it would make life far more bearable...as it is now, they have a horrible rate of failure...with this testing they would know, and it would be easier to justify treating them, if they had at least one good gene that is, otherwise, why poison a person with such lousy odds.  (my guess is most of the ones who did SVR had one good gene and more likely 2... anyway...they may be the anomalies within their ethnicity.)

I suppose we could say this will all be moot when PI's are here but maybe not...the chatter is that they may decide to give the good genes SOC only...and save the spendy PI's for the genetically challenged....DON'T shoot me...it's not MY idea...this is doctor chatter...it is being floated at the conferences. I don't like the idea, but I see how they arrived at it.
It may even work out well for folks in one sense, that the odds are only slightly lower with SOC vs. PI and Soc, for the good genes...and you miss all the PI sides, which can make tx much more difficult.

Meanwhile, back at the factory, I'm wondering how best to attack the beast....so I may do the test even if they won't pay for it...
so thanks for that link...
but I'm hoping the clinics will start to see the wisdom of this prescreening...
it could save folks from unneccessary grief, and/or allow them to make wiser choices that may save their lives....and of course, not everybody can afford the testing, so I'm praying they make it protocol.
The day is coming when they'll test drugs on your tissues ahead of time, and tell us if the drug will help or kill us...can't see how knowing that could be a bad thing!!

mb

[merryBe]

boy, now here's a good example of folks reading into what I said.

actually, I started out with very very low cholesterol. In fact the brain doesn't do well with no cholesterol so rather than continue to take tranquilizers (which hurt the liver) to control the shakes and tremors, which the chemo and helper drugs made permanent, I have tried to raise my lipid profile to normal levels...for me, that meant coming from below 100 to a whopping 150.

everyone gets scared about raising cholesterol, but it is essential to health. If you have spent years trying to keep your diet in check as I have, or if your liver is failing, as mine was, you can end up with too little cholesterol which is as bad as too much, and just as life threatening.

as to how the lipid profile changes your odds of tx working, well the verdict is still out judging from the abstracts I've read, but the general consensus seems to be that the less hydrophobic the cells are, the more likely they are to respond to tx.

Put simply this may mean that LDL is not the culprit once thought, at least not as far as the virus is concerned. How so?

Well, basically the virus loves to coat itself with lipids in order to protect itself from being killed off by the immune system or tx drugs. So then WHY can't we just eliminate fat and have a better result?  Well, in theory that sounds good...in fact vegetarians do do better SVRing, so that may help. HOWEVER the rub is tx is not really long enough to elimninate all our cat and cholesterol....and why not?  Not just because we store fat, but because cholesterol is SO essential to life that in it's absence (assuming zero fat in the diet) the liver will convert other tissues to cholesterol.

That's right, Chol. is so essential your body makes it whenever you run low. You can't blink without it, or breathe, or lots of other good stuff...so it has to be there, and the liver will dissolve muscle, dissolve brain tissue, anything it has to to find more Chol. when you need it.

ergo the next best approach, since we cannot eliminate the stuff is to put a more permeable coat on the virons. Meaning, since the buggers are going to put on raincoats before they go swimming in your blood, why not give them coats that leak!!!

This is where LDL has an advantage over HDL...LDL is a bigger softer, more permeable molecule than HDL... HDL means High density....harder oils basically...ergo, better coatong, ergo, HDL makes the cells more hydophopic, and the virons as well....whereas the LDL leaves more room for the possibility of permeability, if not clear into the viron, than at least to get TO the outer shell, which the higher density lipids prevent from happening.

I'm not saying folks should eat sticks of butter here...someone said that last week...and that's silly...but what we should do is pay attention to the science.
That science which incidentally also has proven that certain oils help with inflammation by slowing oxidation and carbohydrate metabolism...such things as R-ALA, PPC, Vitamin D. Etc.  The verdict is in that these lipids are helpful not harmful to the liver, taken in correct dosages.

mb

[Bill1954]

Could this be the thread you're referring to?

http://www.medhelp.org/posts/Hepatitis-C/Preliminary-EASL-Coverage-/show/1220912