Someone answer me please?

[suezy588]

I was recently diagnosed with hep c type 2 and i was very ill with a pain on my right side. The doctors
think its cronic. I had the viral load done and it is One Million Six Hundred and Eighty I was very upset, to say the least.
I stopped smoking [its been 6 weeks] I quit drinking and started juicing and using hydrogen peroxide food grade, milk thistle
and doubled vitamin c. I also take green food supplement. The pain left; the fever is gone and I feel so much better. They checked for
liver damage and fibrosis and found nothing. All is normal. I wonder has anyone cured themself of this disease?  I am determined in God all things are possible.

[Willy50]

The thrust of this thread came from a recommendation that a newbie with very scant information was recommended that they treat, based on little evidence other than a high viral load.  It was offered that "Hep C is fatal, left untreated."

None of us who recommend waiting a few years are recommending that no one treat EVER.  My main point was and still is that we refrain from diagnosing or offering medical advice, that we try to steer clear of making broad or absolute statements such as the quote above.

I still feel as though it's a mute point what could happen to us as heppers in 10 or 20 or more years.  Many people can wait to treat a few years.  There is strong evidence that in doing so they may benefit thru shorter treatment times, higher SVR rates and a distinct possibility of decreased post treatment interferon and ribaviren side effects which are still a looming and undefined issue for a percentage of people who treat.

I don't think anyone in this thread is arguing to not treat; it's really only an issue of NOW versus several years.  (and as always based on their medical condition)  I think we may be in greater agreement than is evident.

best,
Willy

[DebInDenver]

Hep c may set off many other types of illnesses.  A very good friend of mine died of Hep c 10 years ago.  He had many other side problems which led to his demise, but the top one and the cause was hep c.

I'm not saying hep c doesn't cause other problems or that people end up dying of those other problems, what I'm saying is that MANY people never get to the stage where the virus starts causing other problems.  I'm afraid I'm not in that number, but I know many who are.

[alagirl]

A lot of folks will never need treatment and die of other causes having nothing to do with hep c.
---------------------------------------

I keep wondering just how true that really is.  It looks as though we are finally beginning to research the extrahepatic damage done by HCV and it isn't looking all that pretty.  I'm too tired to find it right now, but there is a particularly compelling study on veterans and renal disease that seems to implicate HCV as a factor in renal issues.  More study needs to be done to confirm these types of issues, but I have to wonder how many deaths are perhaps complicated by factors associated with HCV, if only we knew to look.

[Proactive]

"I have met some of the classiest folks on the financial boards" I have as well, I have also met many who delude themselves into thinking their posts on "those" boards move stocks with $4 B market caps and volume exceeding 2M shares a day..Not to mention many of "those" boards are full of misinformation, misleading information, down right lies, people yelling yahoo and people yelling boohoo.....many wouldn't know a 10Q from a kick in the nuts (to borrow that phrase from an esteemed poster here)
I wish you the best in your investment, I really do...but balance makes the world go round..'nite, have to leave at 5:00am to see the doc...;^)

[Proactive]

"Wow, I'm so tempted to post that Vertex is up today hugely and Schering is down badly, but I won't." You did (vbg)...First of all, don't lose site of the fact that sgp is a multinational big dog (which has done **** poor over the last years) but they do have a pipeline of drugs besides boceprevir(what does vrtx have,702,765,385?-still a one trick pony). I don't suspect the "analysts" (which by the way,motley fool is not) moved the price down do to an epiphany over telaprevir. As to vrtx, I would suspect more a technical bounce off an oversold level..
(I won't go into P&F charts, bollinger bands, stochs etc.) I look at vrtx as an excellent trading vehicle(and have traded it), but I'm still not convinced it is an investment..Perhaps if one really wanted to play "the drug", although not a pure play, J&J might be the much safer way to do it (G) (remember, vrtx needs cash and J&J has it-again, how much more will they have to give up as a result of selling market rights, shares of stock , or perhaps convertible debentures via a VC)
I look at things differently, on one hand you have the drug and it's great possibilities for hepc suffers, on the other hand you have the reality of investment in the drug..I can easily seperate the 2.

[willows]

Wow, I'm so tempted to post that Vertex is up today hugely and Schering is down badly, but I won't.  If you lived and died by the market, today, telaprevir would be the drug of the future and boceprevir is much less in favor, now that the analysts have taken a better look at the data, but again, I won't post that.  The market has been so quixotic lately, makes me dizzy to try to follow it.  Anyway, I'm not sure that I mind the rep of being a stock hound....... And I understand the sentiment of "I'm not going to die from Hep C" and I agree.  It's just the thought of tx again is so very unattractive, but it seems to be a constant for me sometime in my future...so watching Vertex becomes a great diversion.

I have met some of the classiest folks on the financial boards, all of them able to keep the hope for a GOOD treatment ahead of their desire to make money.  It seems to be good medicine for me...keeping perspective on the companies that are trying to find the cure for our virus.   I may not be experiencing success yet, but Vertex is.  And that is good for all of us.  Plus, ya gotta love the fact that WE are smarter about this virus than some of the financial worlds big talking heads...when they stumble, that is such a rush.  Vertex and telaprevir are the little train that could...and does.

[cosmo23]

I have a question. If one can live 20 to 30 years with no side effects of Hep C or even better, out live it. why can't my husband get life insurance? He was diagnosed 10 years ago while applying for life insurance. He was of course denied, and has been for every policy, no matter how meager, ever since.

[mremeet]

Yep I inadvertantly typed in "willing". I meant willows, if you look above at willows' post it'll become more clear.

[mikesimon]

Are you confusing "willing" with "willows"? I have never seen that charge leveled at willing or even an innuendo or intimation suggesting that willing only posts to vertex threads. Mike  

[DebInDenver]

Whenever discussing hep c it is problematic when anyone makes absolute statements.    A lot of folks will never need treatment and die of other causes having nothing to do with hep c.

I decided to start treatment.  I was diagnosed in 1991 and started treatment Aug. 13th of 2007 with pegasys and copegus.  Starting treatment was a personal choice based on a number of factors...one of which was that I could take off from working for a year.  I'm genotype 1a, so my shot of cure is a bit less than 50/50.  I should know if my shot of cure is upped, as next week I do my 12 week vl count.  I started at 1.5 million copies and at 4 week tx. vl dropped to 222,430 copies.  I'm keeping my fingers crossed, but I still know that even if I'm undetectable that's no guarantee.

Anyone suggesting one better start treatment based on viral load is just misinformed.

[mremeet]

I must have missed the conversation where someone apparently said you only weighed in when vertex was being discussed. Not that it matters, you're entitled to weigh in where and whenever you please. And as far as I've seen you participate in a variety of topics, not sure where that's coming from. Anyway, yes I agree telaprevir is one our great hopes. But as we've seen recently boceprevir's looking pretty good too, and perhaps alinia may pan out as well. I think in just a few more years we're going to be able access at least some of these drugs widely, and don't count yourself out of possibly enrolling in a phase 3 trial for either telaprevir or boceprevir (which would enable you to get to it within a year or so). So it probably won't be long before you get your shot at putting this disease behind you too. I know the constant knowledge of this disease working on our livers can really weigh on us over time. But I very seriously doubt you're going to die from HCV, either directly or indirectly. Just take very good care of yourself in the meantime, and remember that your time will come.

[Proactive]

"But it seems to me that the disease is so complicated that any answer to the question of tx or not to tx is very freakin individual and has nothing to do with numbers or percentages"
I completely agree with you on that...For me, I had to treat, it's just my nature...
:^)Pro
PS: I really enjoyed our discussion the other day...Since being diagnosed and especially starting treatment, I really hadn't talked "stocks", read a 10Q or K, not even an S8 or 4..To be honest, I was a bit pumped up and had trouble sleeping...(lol) nutty huh.....;^)
I really miss the knock down drag out pennystock debates the most, but my mind is to foggy to hold my own(G)

[willows]

Wow, I know I have the rep for only being here when Vertex stock is being discussed, but this is a crazy thread.  My gut reaction is always the same....the two folks I've known and lost to Hep C did not have "Hep C" written as the reason for death on their death certificates.   One died from "complications from pnuemonia and hepatic failure", the other from "HCC."   Being a non-responder myself, holding the hands of those two folks gave me more than pause and I spent more than a little while being freaked out about the virus and it's continuing to dine on my liver.  So I know that the numbers are not accurate.  Hep C was finally discovered after a few years of the most horrific deaths occurred with no explanation.  

On the other side of that nasty coin, we are the recipients of the best tech and meds out there and with the wealth of info about how to take care of ourselves, we can all live a nice long time.  Exclude alcohol from anyone's life with Hep C and I figure we can muddle along long enough.  Of course, to clear the virus is optimum, but since when has anyone had it optimum?

But it seems to me that the disease is so complicated that any answer to the question of tx or not to tx is very freakin individual and has nothing to do with numbers or percentages.  With my doc telling me that my 30 weeks of SOC may have given my virus the heads up on mutating against IFN, I'm not so sure that I would or would not try it again.  I find the desire to rid myself of the virus, just to have the damn thing OUT of me...to be very powerful motivation.  

I can't be the only one who understands that when I discovered I carried the virus, I became someone different.  And when I failed tx, well, that was when the life journey really got interesting.  All I can say to all the hub bub here, is that my last bx, I went from stage 2 to stage 3 and that really rocked my world.  Doc said I could treat if I wanted, but he asked me to wait for telaprevir.  So I wait.  And it's cool.  I don't live in fear, not to worry jmjm.  .  But I also know that I ain't just whistlin dixie either.    This is freakin serious stuff here, I guess we just live with it every day and it kind of becomes commonplace.  Now ain't that a knot in the bonnet.

Willow

p.s.  I DO not only post when Vertex is being talked about.  I told you all about my bx last spring.  And I moaned incessantly about all the crazy posters this summer.  

[tedinoregon]

BThompson: "Aren't you currently on SOC treatment?  Kind of contradicts your statements about how you have been beating the disease for 21 years.  Maybe your optimism is waning."

Just because I am undergoing TX doesn't mean it is having a negative impact on my health.  I'm a healthy 39 yo male who works out 4-5x/week and feel great, besides the TX SXs.  I am doing this as I have genotype 2 and the probably of SVR is pretty good.  So why not?  Besides, since my insurance pays for the TX, why not give it a shot and get rid of it.  If TX doesn't work, life goes on.  I guess I'll know how it is going next week, when I get my VL checked, week 4 of TX.

The other motivation is to be able to obtain additional life insurance to ensure my family is finacially taken care of if something should happen to me.  As most of you are aware, it's quite difficult to get substantial life insurance with HCV.  However, if you are SVR for a year after TX, most companies will underwrite a policy for you.  That is State Farm's policy.

[Willy50]

OK......... so I'm not a "rapid responder".  : )    Sorry...working all day till 9 PM

Hey MerryBe.... don't "be" discouraged about getting the feedback.  It's clear that you are trying to help people with your information.  The people who offered some criticism (OK, I'm one too) are also caring and trying to provide help via information about HCV or it's treatment.  It's nothing personal; it's about getting the information right.  Obviously, we all have different takes on what is correct.

Moa had a reasonable point that has been answered but I'll throw this out.  Check out these RVR rates;

http://www.hivandhepatitis.com/2007icr/icaac/docs/091807_c.html

•" The proportion of subjects with undetectable HCV RNA (limit of detection 10 IU/mL) at Week 4 was 79% in the combined telaprevir/pegylated interferon/ribavirin arms, compared with 11% in the control group (P<0.001)."

I don't think we have to be a "doctors and bio-chemists " to see that they are making improvements in treatments.  Schering also has a potentially great compound in trials too which SGP claims could hit market in 2010.  

The fact is that very few people who do TX end up with an RVR; only about 10%.  Hey......by the way...... the Vertex trials have a lower percentage of relapsers than SOC too.

Yes, HCV is a serious disease.  The treatment for HCV is also very serious.    The better treatments coming will limit the exposure to these potentially harmful (the warning list comes right with the drugs) compounds.  Not only will the new treatments shorten TX....or perhaps double the SVR rate but they will reduce the exposure to the current SOC.  Bobbyullc is only one of many who have suffered long term residual sides from the current SOC.  

Yes......there are potential hazards of not treating.  There are also medical issues which have been caused BY the current SOC.  Those are also often under reported or misdiagnosed.  They still don't have a great handle on them but one can see thread after thread about them on these boards.

I stand by my suggestion that people research what they are going to do for a year.  

Did I say a year?  You keep dangling the possibilty of RVR but you don't mention the perhaps greater possibility of extending treatment.  For slower responders who don't achieve a 2 log drop at week 12 one may also see extended periods of treatment, sometimes up to 72 weeks.  Yeah..... one may also need procrit an neupogen during that time too and all too often the insurance companies don't pony up for those very expensive drugs.  

There was a time that monotherapy ruled the roost too......  : )  

SOC with only 2 compounds is on borrowed time.  I wholeheartedly support your decision to treat.  I just have a different take on recommending current SOC to newbies with low staging.

I'm just trying to provide you a reason why I consider it prudent for many (and in this case I mean more than 5% : )) people to wait.

Cheers,
Willy

[BThompson4]

You can be very sick for many years before you die of complications from Hep C.  Just because the disease does not kill you doesn't mean it is not doing a number on your health and is not making you miserable.  

Nobody knew I had hep c until four months after my sepsis episode.  I was expected to die from the sepsis and multi-organ failure.  I suspect many die (especially in smaller, rural hospitals) from sepsis, organ failure, encephalopathy and even diabetes that have not been diagnosed with Hep C.  These deaths don't get counted in the official numbers.

[jmjm530]

Let me tweak the 4th paragraph a little....

"As I see understand it, "Watch and Wait" doesn't necessarily mean watch and wait for Telaprevir -- it means watch and wait until the risks of whatever treatment is current are outweighed by the rewards of SVR, as you compute them as an individual at any point in time. And computed into the "rewards of SVR" would be a number of factors such as current liver histology, age, family and occupational situation, etc, not to mention the emotional impact of carrying the disease which appears to vary significantly from one individual to another"

[jmjm530]

Moa: You haven't answered my question, re someone who has not tried treatment. Why not try 4 weeks first, and see what happens? Odds maybe 80 or 90% if UND at this time. Many acheive this. Why not find out if there is a chance to use less drugs?
----------------
While I said at the beginning of the thread that  I wasn't interested in entering a  "treat or not treat" discussion, I will jump in on this narrow and interesting aspect of the discussion.

Briefly, usinjg a  4-week stop rule as you suggest has merit in certain cases assuming one has the discipline to adhere to it -- because if not it can be a very slippery slope resulting in a full course of tx with odds far lower than the projected 80% for RVRs.

But even if adhered to by the letter, it only addresses part of the equation -- efficacy of treatment. What it doesn't address is exposure to Peg and Ribavirin for 24 or 48 weeks, depending on whether the RVRs in this hypothetical group opt for the longer or shorter course.

As I see understand it, "Watch and Wait" doesn't necessarily mean watch and wait for Telaprevir -- it means watch and wait until the risks of whatever treatment is current are outweighed by the rewards of SVR, as you compute them as an individual at any point in time.  And this computation is very individual. And because like you say, all treatments currently available (SOC and trial) have toxicity, including a shortened Telaprevir regimen.

In other words, in some cases it may make sense to continue waiting -- beyond Telaprevir for example to whatever is next or whatever is after "next".  

And in other cases, maybe it means jumping in with Telaprevir. Or maybe it means jumping in right now with SOC.

Anyway, that's all I really had to say.

Be well,

-- Jim

[moahunter]

"taking tx for 4 weeks and looking for rvr may not be a bad way to go but even with rvr it will be 48 weeks for geno 1's."

I am doing 48 weeks as I failed an earlier acute monothearapy, but my understanding is that current protocol is 24 weeks for geno 1's who are RVR (or possibly around 30).

[moahunter]

It would not surprise me if any new drug that is approved will only be avaliable for relapsers and non-responders first (why subject everyone to additional risk?). Or perhaps as an "add on" if someone is not responding to existing treatment. It is a bit misleading IMO to tell everybody that there will definitley be a new drug available for them in 1 to 2 years time.

[bobbyullc]

rodger.

[bobbyullc]

in the 9 years i waited to tx the success rate went from 15% to 50%.    all the data coming in indicates that those svr rates will increase to maybe 90% with a much shorter tx time soon. the drug co's are on it hot and heavy and are showing some VERY hopeful results. the results on current trials WILL be in within 1 or 1 1/5 years.
if one started tx today the results from trials will be available before he completes and gets his results.
i view it like prostrate cancer. many have it but few have any negative affects if monitored diligently followed.
taking tx for 4 weeks and looking for rvr may not be a bad way to go but even with rvr it will be 48 weeks for geno 1's.
there is no indication that tx with vx and soc for 12 or 24 weeks, with a much higher success rate, will be any harsher than 48 weeks of soc.

[mikesimon]

You say: "i have never seen any of these studies of hep c causing anciliary diseases? they may be out there but where."

They're there - look around. Diabetes, Non Hodgkin's Lymphoma. Insulin resistance and Liver Cancer come to mind immediately.

In conclusion, the authors write. We report the incidence of several malignancies in a nationwide cohort of HCV-infected persons. Although the delayed diagnosis of HCV probably has resulted in an underestimation of the risk, this study showed a significantly increased risk of Non Hodgkin's lymphoma and multiple myeloma.
http://www.hivandhepatitis.com/hep_c/news/2005/031805_a.html

May 8, 2007 — Patients with hepatitis C have a 20% to 30% increased risk of developing non-Hodgkin's lymphoma and a 3-fold higher risk of developing Waldenström's macroglobulinemia, a low-grade lymphoma. "We demonstrated that infection precedes development of these outcomes and that the risk in individuals infected with hepatitis C is consistently increased, with more than 5 years of follow-up," reports the team led by Thomas Giordano, MD, from the Baylor College of Medicine and the Michael E. DeBakey Veterans Affairs (VA) Medical Center in Houston, Texas. Risks were also increased for cryoglobulinemia.
http://www.medscape.com/viewarticle/556228


Conclusions: Patients with chronic HCV infection have an increased prevalence of type 2 diabetes, and this prevalence is independent of cirrhosis. The pathogenesis is intriguing, appears to be unique to HCV, and requires further study.
Mayo Clin Proc. 2000;75:355-359
http://www.mayoclinicproceedings.com/inside.asp?AID=1410&UID=

That took about 5 minutes. I think the risk of HCC is so well established that I don't need to cite any sources but I am sure there are a lot of them easily accessible.

Mike

[moahunter]

The stigma is real - people have lost their jobs. There is a good thread on this, with an article that explains it. All illnesses carry a stigma for healthy people.

You haven't answered my question, re someone who has not tried treatment. Why not try 4 weeks first, and see what happens? Odds maybe 80 or 90% if UND at this time. Many acheive this. Why not find out if there is a chance to use less drugs?

Adding an additional treatment drug to Riba and Interferon will not make side effects better. There are threads with people struggling on these trials.  Maybe the odds will be better, maybe the treatment length will be shorter. But, if it turns out we have great odds at 4 weeks anyway (which you can only find out by trying), the current therapy has to be better than the gamble of puting more toxins into the mix IMO.