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

[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

[Bill1954]

BTW, this is the forum at it

[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