HCV: should i begin treatment, or wait for VX-950?

[niceguy2007]

hi everyone,

i got my test results back...

This time, ALT was 103, but AST was 28, virus load is 12,000 IU/ml.

A month ago, ALT was 24, AST was 18, virus load was 13,000 IU/ml.

i'm 25 years old...probably got virus within 4 years ago.

Now the doctor is pressing me for treatment, but i'm considering waiting till the VX-950 comes in.

What do you guys say?

[niceguy2007]

oh, and i'm genotype 3.

[Eyedeas]

If you were exposed only 4 years ago,you probably have no or minimal damage.  Only a biopsy will tell.  This is a slow moving disease "as a rule"!  Under normal progression you could have 5-1-15 years before damage starts to show.  I'd wait for sifferent treatment if I were in your shoes.

Kim

[niceguy2007]

here in japan, doctor's also use an alternative method to "estiamte" the liver damage.  

they use biopsy too, but they also use this method, of using the Zinc Turbidity Test, or ZTT value.

mine was 18, which was above normal of 12.

so, the doctor is guessing that my stage is fibrosis 1, inflammation 2.

[jmjm530]

Assuming little or no liver damage, personally I'd delay my decision at least a year to see what happens with the current Vertex and other trials.

Right now your chances of success with 24 weeks of treatment are around 80% but it means exposure to both Interferon and Ribavirin for 24 weeks, both nasty drugs. Hopefully, that exposure might be cut in half (or even better) for geno 3's although you may have to wait several years to find out because currently the trials are only for geno 1's. Down the road (and no one knows when) the hope is that the next generation of treatment will be without Peg and Ribavirin.

Another alternative might be to do a short-course treatment as one of our members Rifleman successfully completed.

Short course is 12 weeks or 16 weeks for geno 2's and 3's, depending on which Peg you use. 12 for Peg Intron, 16 for Pegasys.
The catch is you must be non-detectible at week 4.

Therefore one reasonable strategy might be to invest 4 weeks in treatment and continue another 8 if non-detectible at week 4, but if detectible, bail out and limit your exposure to 4 weeks. Then adopt an watch and wait approach for the newer drugs.

Just keep in mind that if you decide to take a watch n' wait approach, you must WATCH your liver during that time. In other words periodic follow-ups with your docto to track fibrosis progression, if any.

As you probably know, there are no doctors here and the protocols mentioned above are simply my unprofessional musings on the subject, and should not be substituted for any medical advice given by your doctor. Still, wouldn't hurt to discuss with him all your possiblities, including the above.

All the best luck whatever you decide.

-- Jim

[jmjm530]

Nice: Now the doctor is pressing me for treatment
-----------------------------
I just want to add that whatever you decide, take your time and make sure you're comfortable with your decision and don't let anyone "press" you for a decision, including your doctor. In fact, getting another medical opinion or two is always reasonable with such an important choice. My doctor never "pressed" me even as a stage 3, but he did lay out the pro's and con's of treating, leaving the decision and timing of treatment to me.  Well he laid out the pro's and glossed over the con's. LOL.

[niceguy2007]

jim,

so is vx-950 gonna be effective only for genotype 1s, or can 2 and 3 use vx950 also?

furthermore, cud it be possible that treatment time is cut only for geno 1, and not 2 and 3?

[jmjm530]

I believe the initial strategy was to trial geno 1's since that is the predominant and hardest to treat genotype here. How effective it will be with geno 2's and 3's is only speculation, as is projected treatment time with Vertex for any of the genotypes. By the end of next year we should definitely have a better idea regarding tx time and efficacy for geno 1's. You might want to contact the company and inquire about their plans for geno 2's and 3's.

-- Jim

[niceguy2007]

plz plz everyone give ur comments! thanks :)

[Bill1954]

You've gotten some good advice above. If were in your shoes, however, it would be a no-brainer; treat. I feel that with genotype 3, and age in your favor, you stand a 70%+ chance for SVR. Treat and watch your viral load closely for the first 90 days, and make Tx duration decisions based upon personal response. Odds are this HCV ordeal will be in your rear-view mirror before you know it. The vast majority of people survive current Tx in one piece; just look at the numbers and I think the decision is there for you.

Take care,

Bill

[GrandOak]

I agree with Jim.  I believe the trials are focused on G1's because of them being the most difficult.  I also seem to recall that initial mono-therapy trial was on all geno's.

As for tx'ing or not.  I might suggest getting a biopsy to see what grade and stage your at.  Enzymes and VL's don't really mean much as far as liver is concerned other than to indicate something is going on and whether tx is slaying the dragon.

[mremeet]

I would wait under the following conditions: (1) your liver is minimally affected at F1 or F0. You need a biopsy to find out, but at 25 with only 4 years infection you probably are in this ballpark...unless you're one of the rare/unlucky ones where the virus is moving quickly (most people take 30 years or more before they approach cirrhosis). (2)You live cleanly, don't drink, don't drug and take care of yourself. (3) Keep close tabs on your health with 1 or 2 visits a year with your hepatologist.

Then I would simply wait and see what us guinea pigs discover on this current VX-950 trial. Within a short year or two, much more will be known. And if all goes well, we will end up with a treatment that is more humane w/less side effects, will require a shorter duration of treatment, and will be much more effective (i.e. likely to cure you). They haven't tested VX950 on non-genotype 1's yet, but non-1's are still strains of HCV just like type 1 is. So I would be willing to lay a fair wager VX950 (or some other PI) will kill genotype 3 just fine when they get around to testing it.

Lastly, you should know that your young age, your very low VL of 12,000 IU/ml, and the fact that you have a non-type 1 genotype is very good (other than having HCV at all). These factors very significantly make it more likely you will successfully respond to current treatment, and require less time on treatment to do so. And if your liver is in good shape (which it probably is), you're not overweight and otherwise healthy, then these factors also make it more likely you will respond to current treatment. Since you have most or all of this going for you (really I can't think of a better scenario to be in for an HCV patient), you would probably respond very well to current treatment (which would be about 85% effective based on your stats). And since at least some part of the current therapy will be incorporated into one of the upcoming protease inhibitor treatment schemes, then that could mean your future course of therapy could be ~3-6 months in duration with a greater margin of likelihood for SVR-ing (which is already ~85%!). Plus the possibility exists for lower side effects, especially if it's determined ribavirin is not required.

So considering all of these factors, IMHO I think waiting another year or two to see how these PI's pan out is a good idea. And again, most people take 30 years or more to get to cirrhosis. If you take care of yourself and keep in touch with your doctor, another year or two on top of your 4 years so far shouldn't be too much to worry about. Good luck with whatever decision you make.

[amommy]

Well, if I were in your situation, I would probably treat, with conditions.  I would be looking to do short course treatment.  So, I would treat insisting on a PCR test every week of treatment to determine when you clear.  If I was not clear at week 4, I would probably stop tx and wait on the vx 950 or other new treatment.  If I was clear at week four, I'd stick it out to 16 weeks and call it quits.  

I am 29, f, geno 2.  I was underdosed on riba at the start, but still cleared at week 4.  I opted to split the difference since I had been underdosed and complete 20 weeks of treatment.  I will find out within 2 weeks or so if I am still clear at 3 months post.  I suppose those results could easily change my opinion on this matter.

[Mister beagle bailey]

This a tough choice to make.  Non here are drs and we have no idea when and if VX-950 will be ready.  I was a 2B, viral load 317,000, min damage to liver and could have waited for newer drugs.  However, I decided to treat rather then wait and I'm happy to say I'm 6 weeks post treatment and undetectable, glad I choose to get it over with.  As your a geno 3 you will treat for 24 weeks like me, the choice is your and your alone but if it was me I would treat.

Good luck on what ever you choose and just know your not alone, we are all here for you what ever you decide.

Beagle :)

[Bill1954]

Something that’s dawned on me lately is the fact that we (patients and doctors alike) spend huge amounts of time and energy trying to analyze the dynamics of this virus itself and just maybe don’t consider the psychological implications of an HCV diagnosis.

Niceguy 2007 above asked for opinions on whether or not to treat with the current Tx protocol.  My response may have sounded somewhat blunt; “... A no brainer- treat...”. I guess I didn’t express my underlying feelings; I’ll try to do that now.

There is an emotional/psychological trauma involved with this diagnosis. Not all, but many of us here were reasonably healthy prior to Dx, and this may have been our first exposure to a chronic disease; much less one that has potentially life-threatening implications. Along with that, it can easily take two years or more from diagnosis to completion of treatment. Some of us additionally make significant life-style changes; we might modify and/or lose our jobs, our relationships with family and friends become stressed at times, and to top it off, we’re still left with an uncertain prognosis for up to six months post treatment.

This all ads up to a tremendous amount of stress; the wisdom of carrying this weight on our shoulders for another few years waiting for a drug that may or may not be a panacea for HCV is questionable at best.

Keep in mind that most of us can go through the IFN mill and come out the other end in one piece. I’m not necessarily discouraging the “watch and wait” practice, and for some of us it might be suitable. We’re all individuals with individual personalities, but remember to way *all* the implications in our decisions.

My best wishes to all who have been touched by this disease--

Bill

[jmjm530]

You make some good points. But as someone who has practically "lost" a year and a half out of my life -- not because of the virus but because of treatment -- I question whether the stress of waiting can even come close to what some of us (not all) experience on treatment.

I also think that a lot of the stress with a watch and wait strategy is self inflicted. I had the virus for close to 40 years before treating and knew about it for the last 4. My stress levels didn't go up until I got my stage 3 biopsy report a couple of years ago. I would therefore argue that a biopsy that showed little or no liver damage, coupled with newer drugs in the trial pipeline, would *relieve* stress, not add to it.

In another year, we should have a pretty good idea what Vertex will or will not do. This seems like a very reasonable waiting period for many with HCV.

-- Jim

[cao]

I was a type 2 & chose to treat (at 30) and am really happy that I did,  The 24 weeks, while unpleasant, were not unmanageable (even with a toddler at home) and the ability to look forward to the rest of my life without this virus is really, really enpowering.  My only regret is that I didn't start six months earlier (it took me a little while to get the courage to commit).  Not everyone has an easy go of it, clearly, but not everyone has a miserable time either.  I'm pregnant at the moment and frankly I'm having a much worse time being pregnant in the midst of summer than I did going through the tx.  My husband actually keeps telling me I was much more pleasant then as compared to now (stupid hormones).  Good luck with whatever choice you make -- you're lucky to be young & have a favorable genotype!

[bobbyullc]

i am with jim,
i have spent a year on the couch while life was going on all around me and i could not participate. a year wasted from my life. if i could have waited a few years to find out re. vx950 i would have. the only stress with waiting is self imposed. 2 years is not a long time to wait for a drug that could possible be the majic bullet and you can avoid all the misery we went through. read the sides in the sheets that come with the peg. 65% have fatigue, 30% have depression, 35% have blood problems, 10% have thyroid problems,and on and on. now compare that to what may happen if you wait 2 years. i had hep 37 years before i tx'd and i will wait if i do not clear for vx950.
my opinion only. i would give anything to be in your shoes.
bobby

[Kalio1]

You have to decide, can you live "with" this virus paycholocgically and physically waiting on drugs that are not going to be available for at least 3-5 years at the earliest? You are young, your chances of getting rid of the virus are at the highest now if you treat. You also have geno 3 and we have no way of knowing if the "new" drugs "work" on geno 2 and 3 since so far they only are testing geno 1. Geno 3 has a HIGHER risk than other geos for you to have scarring more rapidly. You already have some scarring and at your young age I would guess your scarring is due to hep c. The younger you are the more likely you are to kill the virus. IF you have damage, the more damage you have the less likely you are to be able to clear the virus. Some of those advising you to wait on drugs that are still in trials did the treatment already and CLEARED the virus, they did not "wait" on better drugs like they suggest you do. THey advise you to wait until you have MORE liver damage (stage 3) before you treat, but studies show more damage lessens your chances of clearing the virus. Ask your doctor lots of questions as to why he advocates you treating now, obviously he feels it is in the best interest of your health. Good luck with your decision.

[mremeet]

Bill I agree with you that HCV does impose an emotional toll that must be factored into the decision too. Speaking for myself, HCV caused a great deal of stress in my life long before I even found out I had it. Chronic fatigue, brain fog and insomnia plagued me from the time of infection when I was 17 up until when I found out I had it at age 31. It was like some mysterious anchor around my neck during the years of my life that should have been the best. After that, on some level the stress was decreased because I finally knew what I was dealing with. But of course a new form of stress arose knowing this disease was slowly taking me down, combined with the troubling aspects/prospects of current therapy. Meanwhile, the various parasitic maladies (insomnia, fatigue, fog) continue to contribute to a lower quality of life.

But with all of that said, I also agree with jim. If I were niceguy, was only 25 yo, had an F0/F1 liver, type 3, low to moderately elevated liver enzymes, no other major health problems, didn't drink or drug...then I would not be overly worried at all. I would understand full well that I was largely in the driver's seat, and that I had a very slow moving disease that largely can be successfully managed via good health habits. I would also know that the worse case scenario of waiting 2 years and all of the PI's (including SCH 503034) turned out to be an abject false hope (which I think unlikely), then I wouldn't really be behind the power curve that much. His liver and overal disease histology is unlikely to change much in that timeframe, he'll still be young and all that implies for excellent treatment response, the existing SOC will still be available, and any minor liver damage he has is likely completely reversible if he sucessfully completes treatment. Couple this scenario with the decision to treat immediately and the usual risks of failing treatment (remember approx 15-30 people out of 100 still FAIL current therapy) and the semi-vague possibility he could be saddled with short term or even serious long term health problems associated with IFN and/or riba.

I think in balance if I were in his shoes and knew all of this, I would probably opt for holding off for a year or two and see what pans out. To me that would be the least stressful thing to do, which could also result in a less stressful and more successful treatment course in a few years hence.

[jmjm530]

Kalio: Some of those advising you to wait on drugs that are still in trials did the treatment already and CLEARED the virus, they did not "wait" on better drugs like they suggest you do."

You're again insinuating a double standard for those that don't agree with you. I've only advised those with little or no liver damage to wait. I had stage 3 liver damage, and frankly to do it all over again (if I had a crystal ball and knew what I know today) I might have still waited. There is no double standard here, but a single standard and it has to do with liver damage. This has been a pretty civil discussion so far, but you do have a tendency to raise the heat with misleading and personally directed statements like above.


Kalio: THey advise you to wait until you have MORE liver damage (stage 3) before you treat, but studies show more damage lessens your chances of clearing the virus.
-----------------------------

Actually most of the recent stuff I've read does not rate liver fibrosis as much of a factor until stage 4. If you have any recent studies that contradict this please post.

[mremeet]

No one said or implied for niceguy to wait until he was F3. And the opinion I offered to niceguy is exactly what I've been doing myself for nearly ten years (not the mere one or two suggested by jim and myself). Waiting for a better treatment to come along than the current SOC. And I decided to wait because I assessed my disease progression (which is realtively mild, F1 liver) and wasn't thrilled with the current SOC. Niceguy is asking for personal opinions; just give yours and avoid throwing out an array of red herrings and straw men by misquoting people.

[Bill1954]

Jim- one of us is obviously displaying bias; thankfully it’s not me ;-)... Seriously though, are you looking through the eyes of likely SVR? I know that relapse has certainly biased my perception of this disease, along with the various treatment strategies. I realize this sounds pessimistic, but even with fast-track designation, the odds that this will be available in two or three years appear staggering. We’re not only in the dark as far as SVR data, but the approval hurdles (with or without fast-track) are still in force, and other factors such as competitive and in-house legal issues may also arise. I just hate to see patients making treatment decisions based on this one class of drugs; when for many the cure is only six months out with current Tx. This then relieves the patient of the angst involved and lets them continue on with their lives. I also lost nearly two years of my life to this disease to treatment, and the clock is still ticking. As I mentioned above, “watch and wait” definitely needs to be on the list, but I just don’t think it’s appropriate for the easy to treat population. IMHO, that is ;-).

Respectfully,

Bill

[Bill1954]

BTW, this is the forum at it’s finest. It’s the stuff we all enjoy to read... Thanks guys ( and gals)!

[jmjm530]

Bias??? Me, you, anyone. LOL.

Again, I agree with a lot of what you say, but all I think Mre and myself are saying (at least in part) is for those who can wait (little or no liver damage) to just wait *another year or so* to evaluate the trial data. Not wait 3-5 years hoping in the dark that the magic bullet is coming, just wait another year for the SVR data to roll in.

If things don't look so hot, then sure, reevaluate the decision to treat with more conventional drugs. If they do look good, well, a reasonable decision might be to wait longer while being monitored.

Your case, of course, is quite different, and I know how much thought you've given the various alternatives. You and I have been through this war together from the beginning and I can't tell you how much I admire your attitude in the face of having to fight still again. Don't think I could have handled the same situation with so much maturity and composure.

-- Jim

[sfbaygirl]

Hey, I'm always SOC (your version) lol. Speaking of which, I am still wondering about that study on WBC you sent me to the other day. (BTW I can't bend over today b/c of the Neulasta shot.LOL) I think my mouth stayed shut though, so no duct tape. How about you?

Was this the ONLY study about this? I am wanting to stop taking this Neulasta and have not stopped thinking about your post since. This stuff is brutal!

Anyway, I miss vacationland, especially when I don't have to get those darn shots!

[Forseegood]

Just wanted to stress this last point, even with all the aggravations that a case of full-blown HCV entails....any young person who has only had this disease for 4 years (and tests out healthy)....isn't in any big danger of getting some raging case of this disease within "one" or "two" years time (to see just how these new treatments fare)...we have to make calls using this "particular" young man's circumstances, not our own...

Just my opinion and I'm sure you've had enough of 'em, hope everyone has a good weekend...

[jmjm530]

Well you're on course with me, at least most of the time :)

What I posted earlier on WBC was both a study abstract and web site commentary if I remember correctly. You might want to order up the full-text article for more details.

I don't think this was the orginal study I was looking for so there indeed may be another study out there, don't know but I'm sure MS Google does :)

If I were in your bikini I'd order up the study but first I'd probably need a sex change operation --  then get out the yellow highlighter and highlight the pertinent parts, and bring it to your treating doctor's attention.

Besides the study, several of us have heard the same thing from our treating hepatologists. In my case, my medical team doesn't even think about Neupogen until ANC hits 200-300 and even then they give it a chance to bounce back up first. My NP said they *rarely* use Neupogen and they treat a massive amount of patients.

-- Jim

[Kalio1]

He is young, has minimal damage and a favorable genotype,there is a excelent chance he could be FREE of HCV forever by spring with current meds. Or, he can wait with it potentially harming his health and his sanity for years to come all the while having an infectious disease he has to alert people he engages in relatioships with to. That alone can have a very negative impact on his life.

The reality Bill points out, that HCV has a tremendous impact on your emotional life should not be discounted. This disease does not just affect your liver it affects your entire body and your entire life.

[Forseegood]

well, like Bill said, we've all given him some really good points to chew on, pro and con...one of the eternal questions here...

[jmjm530]

I'd just like to echo in part some previous thoughts before I go to lunch instead of the gym which I really wasn't in the mood for anyway :)

You're young and have minimal liver damage. You're also sitting on the cusp of what many believe to be the biggest breakthrough in hepatitis c treatment history. You couldn't be in any better position and frankly I'm jealous even though it looks like I'm gonna SVR. I mean that. If someone can convince me that waiting another year to see how the Vertex trials pans out is not the right decision, then I'd treat all over again. No, not really :) As stated, you can always decide in a year's time to treat with Peg and Riba should the newer drugs not pan out. Believe me, it's not like Peg and Riba are so wonderful you should be in a hurry :) As a distant second choice, I'd definitely consider the short-course treatment to limit your exposure to the current treatment drugs.

-- Jim

[niceguy2007]

you guys are all awesome...i've never come across a thread like this one on teh forum...

i'm a nervous kinda guy...rite now im panicking about my PIVKA-II test thats supposed to predict liver cancer in CIRRHOTIC patients :(

i havent done my biopsy yet so my stage is just a guess based on the ZTT value.

[jmjm530]

Def get your liver damage ducks in order before making a treatment decision. Without knowing how much liver damage you have, either decision (treat or wait) will have more risks IMO than would be involved in a biopsy.

Your doctor says you are stage 1, try and get his reasoning. ZTT isn't used here as far as I know but some doctors do use blood markers and maybe this is a newer one.  Ask him about the PVKA because it may only be relevant if you already have cirrhois which you probably don't. If uncomfortable with your doctor tells you, get another opinion. All the best luck.

-- Jim

[susan400]

I have mixed feelings on this.  Since I have treated 8 times without ever clearing, I do not have an unbiased opinion. With that being said....I do think that I made the only decision that I could have at the times that I decided to treat.  After having 3 biopsies in the last 12 years and each one showing progression, instead of any improvement, I'd say that for me, treating was probably not a good idea. However, if I had not treated, I could be standing in line for the next available liver by now. Nobody knows what could have been, but God.  I did pray about it every time I made this decision.  I started out as a Stage 1 and now I'm a Stage 3, dispite 8 times of treating and at times with very high doses.  However, there are others who have treated ONE time, got SVR and went without ever having to worry about Hep C again. I'd say pray first and then, make your decision based on what God says, your doctor, and your own life and whether or not you can fit treatment and all it's side effects into your life.

Susan

[Kalio1]

Many doctors do not even recommend a biopsy for geno 2 or 3 and in your case, with you being infected for only a few years and being so young I wouldn't be suprised if your doctor said you don't need one. Many doctors recommend 2 and 3's treat without doing a biopsy. Did your doctor say he wanted to do a liver biopsy or did he recommend you treat now without a biopsy? I know it is common practice for doctors to advise geno 2 and 3 to treat regardless of biopsy due to the high probability of clearing in 24 weeks.
Have you gotten a second opinion from a specialist
or another GI? Sometimes a second opinion can be beneficial in helping you make your decision. Remember there is no rush to decide, you can take all the time you need to come to a conclusion as to what to do.

[Morgaina]

I'm geno3, probably have had the virus at least 25 yrs. When I first read your post, I thought "no way, wait for easier treatment" I had a fairly difficult time, and only made it 22 wks. Now I've been reading and listening to everyones thoughts and factual knowledge and may have a different perspective. You are young,your geno calls for a shorter length of treatment (especially if clear at 4 wks.) It SEEMS long lasting side effects or more lasting Inf/Riba damage comes with longer treatment. Now that I have treated and cleared (so far) I realize the havoc this virus was creating in my system for a very long time. My QOL was low and I never realized it was the hepc. The idea of trying treatment with the objective of RVR (rapid virul response)and dealing with a short treatment of 12 to16 wks. makes great sense. Your life would be free of any worries or second guessing because of living with the virus,there would be none any of the insidious little effects that bother some of us daily that we would not even think of attributing to hepc, even if the treatment was difficult for you, it would take very little time out of your life, very strong chance there would be no long term sides with such short exposure to the drugs, very strong chance you would make rvr because of age, geno type and length of time virus has been in your body, and you would be free of this virus and any physical or psychological effects for the rest of your wonderfully long life! If no rvr (I'll bet you get there) you can review with doctor and the brilliantly wonderful people at this sight. But when I imagine living my life with none of the physical effects (for the last 25 or more years) and psychological effects (for the last 10 yrs.) I could only compare it to some kind of bliss. A wonderful version of freedom!! But that is just my humble opinion.

[niceguy2007]

kalio thanks for teh input,

but where did u get the info that genotype 3s have faster disease progression? i know they have faster steatosis.

[Forseegood]

Well, doctors saying to 3's "don't biopsy and go ahead and treat right away" might be something in the past for some doctors... in the past, they didn't have the added factor of the possible outcomes of these trials that are now in session...

This is what I don't understand...no one here would venture that a guy with no liver damage (pending biopsy) and a history of having the disease "for 4 years", would have a raging case of this disease in one or two years...that doesn't make logical sense, this is a slow moving disease...once you've had the disease for much longer periods of time, then you can make a case for the progession to be a bit more rapid...but not at 4 years...

So if it's okay to wait 1 or 2 years in terms of disease progression (not any) why wouldn't it make sense to wait and see how these drugs pan out? Worst case scenario is they don't pan out, then take the *current* treatment at that point and Bob's your uncle...this fellow has time on his side to wait to find out....many people don't but that's not *his* situation...

As far as the psychological aspect to all of this, just try and put it out of your mind till the results start piling in from the trials...it's a lot easier pyschologically if you *know* you have no liver damage and youre feeling perfectly healthy...at least to me....you've made a plan so it's mapped out for you....then proceed from there...respectfully to all...

[Kalio1]

Let's not forget that the "newer" drugs that are promised are drugs you take WITH IFN/RIBA. They haven't even begun to test VX950 as a stand alone drug, so waiting on the "new" drugs won't save anyone from having to do Interferon and Riba.
What if it turns out you are wrong and the drugs are NOT approved?

[jmjm530]

Bill: BTW, this is the forum at it’s finest. It’s the stuff we all enjoy to read... Thanks guys ( and gals)!
-----------------------------------------
Well, it certainly started out that way and almost posted such until lack of factual and civil argument was replaced by questioning the motivation of those with opposing viewpoints as I mentioned in C21. Probably best I go the gym and leave it at that.

-- Jim

[sfbaygirl]

I agree with Kalio, you never know what is going to happen in those couple of years. When she states that geno 3's have a more rapid rate of progression of the disease, that would scare me to want to treat now. I have heard too many stories about people progressing rapidly to cirrohous.

I waited for many years, because the tx's were not worth it at 20% for 1a's. I am really glad I am treating now and I got the nerve to even do it. I would love to wait for the new drugs and will if I don't reach SVR, but I wonder how bad I would be now if I had waited for a few more years.

I guess I am a pessimist and since it took so long to finally bite the bullet, it freaks me out to think what it could have been like if I had waited. My best friend died at a young age of liver cancer due to Hep C and I still waited. Now I feel stupid that I did.

[Forseegood]

I'd wait, most people here and elsewhere will report that they didnt even start to get damage from this disease for at least 15 years, many 20 or 25....

Say, for some reason, youre not one of those people and started to get damage in 10 years, that's still a long way off for you...it's a question of weighing degrees of risks and advantages, the advantage of clearing this disease which would be wonderful and those who have advocated to treat are right about that....and youre in a higher percentage bracket for clearing then me, as a geno 1...

To the risk of possibly suffering consequences of treatment related problems, and there are plenty of those too (because they just don't do great follow-up with this disease, all these numbers can only be guessed by educated guessers)...yeah, these problems could and can relsolve after 6 months, a year, or two, whatever...but that's a long time to be suffering with maladies besides the time of the actual treatment...and youre still very young...

This is not to say that all people who treat suffer post treatment lasting sides, some people treat, clear, and are fine a month or two after "the interfon hangover", but there are some who do have lasting sides...

I am one of those people who decided to watch and wait, Ive had the disease maybe 30 years, and I can assure you, I didn't even start to have problems till about 2 years ago, and I still have low liver damage, there are plenty of people like me too...

When I was your age and only had the disease a few years, I was completely fine and healthy and was that way for many, many years afterward...(for a long time now I've been a real healthy "liver" so to speak, with a good lifestyle)....though now I'm 52 and I better start to do something...

You on the other hand??? I'd wait, at least a year ot two to see how these new drugs fare like Jim said...maybe weigh all the personal opinions like youre doing now, research the h*ll out of this topic, then talk to a few hepatologists if you can, then come to some kind of decision...good luck to you...

[Bill1954]

There has been some inteligent and hard-won information exchanged here today; I hope all those that are considering treatment take the time to review this thread. There’s a lot to be learned here-- I just wish that health care providers would take the opportunity as well. Just some thoughts,

Bill

[Forseegood]

you know, in my typical long winded way, what I really wanted to stress...and I think "most" people would agree....you could probably "afford" to wait at least a year to see how these new drugs fare, with your particular circumstances...I don't think you'd have some kind of raging disease within a years time...the odds are definitely against that...

[mremeet]

"Let's not forget that the "newer" drugs that are promised are drugs you take WITH IFN/RIBA. They haven't even begun to test VX950 as a stand alone drug, so waiting on the "new" drugs won't save anyone from having to do Interferon and Riba."

They HAVE tested VX950 as a monotherapy, it showed the most effective antiviral activity of any drug so far (comparable to the ill fated BILN2061). Those were the first battery of short term tests performed over a year ago. And right now it has not been determined what combination of current drugs will be offered with VX (or another PI). One or two years from now, it may be shown that ribavirin is not needed, for instance. Although it is very likely it will initially come with peg IFN. Plus, obviously another possibility is that even with peg/riba the course of treatment could be shortened along with increasing SVR rates (making retreatment with IFN/riba less likely). These two factors would reduce the total exposure to the harmful effects of peg/riba, which is a good thing.


"What if it turns out you are wrong and the drugs are NOT approved?"

Then, as stated, he would simply use the SOC. Plus, you stated that it would be 3-5 years at the earliest before FDA approval and deployment. I think you're being overly pessimistic and cynical. Although its true that most research drugs end up dying in development, there is a real momentum developing for these PI's. He could have access to these drugs MUCH sooner than that. First, because one or more of these drugs could easily be approved sooner than that, and secondly because he could enroll in a trial which will in all likelihood be available to someone like himself within two years. How do I know this?? Because I'm enrolled in an VX950 trial at this very moment.

[sfbaygirl]

Just wanted to add that even though I have some horendous sx on tx and am only on week 16, I don't regret starting tx. I understand the risks of lasting sx and I will still treat until I reach SVR.

Of course there are some days, like today, when my bone pain makes my QOL suck big time, but I now am doing something about my disease and that makes me feel good.

Waiting and wondering what was going to happen to me, while not doing tx, was worse for me. I think Bill is correct about that psychological feeling. I know it is probably brought on oneself, but it is still there!

[sfbaygirl]

What is SOC?

[Kalio1]

Testing VX950 as a monotherapy without SVR data is moot if you ask me. SVR data is the holy grail. So far, we have NO SVR data on these drugs. All the guesstimates of if and when the drugs will be available are just that, GUESSING. Anyone with geno 2 or 3 has a decent chance at clearing this virus with current meds TODAY especially if they are young and have minimal damage. If they are geno 2 or 3 they have a excellent chance of clearing it in 6 months and living a HCV FREE life.
Even IF VX950 turns out to be the magic bullet you still have to take IFN/Riba with it so I don't get what good the waiting does. The virus is correlated to MANY extra hepatic conditions and illnesses that should be take into account when deciding to "live" with Hep C you are deciding to "live" with highly increased risks for other diseases ( cancer, diabetes, etc) and illnesses not just liver problems.

[Bill1954]

Standard Of Care= SOC

[jmjm530]

SF: What is SOC?

(S) sfbaygirl (0) off  (C) course (on this topic)  LOL

------------------------------------------------------

Stands for Standard Of Care, meaning peg and riba for now. Hope this finds you well and recovering from having to be re-introduced to the real world from vacationland.

[bobbyullc]

"emotional toll" has been mentioned. i think the toll of treating is far worse than the toll of waiting.
as for loosing friends and jobs by waiting? i let friends slip away by not being there and never could have worked on tx.
even if vx950 is combined with peg it still will likely be much shorter tx time and higher svr rate than now. one year to wait???? big deal.
people always mention friends lost to hep c but fail to mention that not one was stage 1,2 or 3 and most had it for MANY years. at stage 3 i never even felt it and had a very active life.
i waited as long as i thought i could, 9 years, before tx and enjoyed every day. i still wonder if i should have waited 2 more years.