What's the call?

49 year old white male,170 pounds,thin,low chlorestral in decent shape. Stopped drinking 4 months ago still smoking
Anyway...viral count 9 million liver biopsy stage 0. Getting second thoughts about doing the treatment in 2 weeks.
Would appreciate some input...from what i'm reading here this sounds like it's going to be hell !

[DD9th]

The tx wasn't as bad as I imagined, but I'm only on my 4th week.  

To me it was either 6 months of tx, or the daily worry for rest of my life about the condition of my liver.

Since I have insurance now, I didn't want to put it off.  

[copyman]

With stage 0 biopsy wait for new meds coming out in 2011. As long as you don't drink you should be fine until then.

As discussed on this forum many times viral load should have nothing to do with decision to treat.

Good luck

[WriteItDown]

But we don't know what your genotype is.... the new meds Copyman is talking about are for Geno 1.  If you do have Geno 1 I agree with Copyman -- I would wait for Telaprevir or Boceprevir to be approved.  If you're another genotype you have a very good chance of clearing with current SOC.

[newleaf09]

I agree with the above. If Geno2 and you intend to treat, it will only be for 6 mos.  If Geno1 (more common), with no damage and having stopped the insult of alcohol to the liver, wait for the protease inhibitors to be available in a few years so you'll have a good chance at shortening the treatment to 7 mos.  Forget about the 9M VL.  It does not indicate how you will respond to interferon.

[parforthecourse]

Thanks all for the replies
I am Geno type 1A
There are no guarantees that the new inhibitors are coming is there?

[lapis]

Guarantees?  I don't know...but I'm sure that Telaprevir will be coming out just as soon as all the hurdles required for drug approval are cleared.  I was in a Phase 3 trial for this drug, and Phase 3 is the last phase in the research and development of new drugs.  I am very grateful to say that I've cleared the virus, and only treated for 6 months, although I also have geno 1b, which usually requires a year of treatment.  

While it's no picnic, treatment is do-able, so hang in there and just make your best decision for now.  If you do decide to treat now, there are lots of people here to give support, advice, and the occasional much-needed chuckle!

Lapis

[Bill1954]

No, no guarantees that the drugs will become available; and when they do the insurance industry has to figure out if they’re gong to pay for them.

They’ve (TVR and BOC) gone through the bulk of clinical trials though; farther than any other PI drugs. I do believe most of the safety stuff has been determined, so this helps too.

I did two courses of IFN treatment; while I personally tolerated them fairly well, they’re still strong drugs. What position does your doctor take on all this? He has your chart, and hopefully he’s privy to your health profile.

Bill

[parforthecourse]

I just found this site yesterday and I'm up in the air on what to do. The DR. never told me about TVR or BOC. As of right now I'm scheduled to begin treatment on the 29th. I just found out about my biopsy yesterday so I'm trying to get up to speed quickly.

[Bill1954]

I understand, thanks. Welcome to the discussion group, by the way.

If your doctor didn’t bring this option to you, I’d definitely bring it to him. Nygirl recently posted a NATAP summary of the new drugs; I’ll post a link to the article here:

http://www.natap.org/2009/HCV/100809_01.htm

(If the link takes you to a page with multiple links, click on the one titled “Hepatitis C drug development at a crossroads”)

Note that the new protease inhibitor drugs will be used in conjunction with the current treatment; not instead. However, the preliminary data from late phase clinical trials indicates it will increase efficacy to roughly 70%, form the current 45%. Additionally, they might reduce duration of treatment from 48 weeks to 24-28 weeks in select patients. The net result might be to reduce exposure to the interferon/ribavirin combination.

You might print this and take it with you to your next appointment, and discuss it in depth to see if you’d benefit from it. From what you’re telling us, it sounds like you’d be an ideal candidate to wait a bit and see what transpires with these new products.

Another source for basic information is Janis and Friends; here’s a link to their ‘newly diagnosed page:

http://janis7hepc.com/have_you_been_just_diagnosed.htm

Be sure to review any topic of interest in the section ‘other HCV information’, located in the right-hand margin. Be sure to bookmark this site for future reference.

You are fortunate not to have any fibrosis; and I wouldn’t be in any hurry to jump on this; take some time to learn and understand this disease and its management first.

Take care—

Bill

[WriteItDown]

My husband began treatment a few months ago, he is on a clinical trial of a new protease inhibitor, similar to Telaprevir.  However, if he had not had the opportunity to be in this trial, he would have waited until the new drugs are approved.  Mostly this is because he did not like the odds or the fact that he'd have to treat for at least 48 weeks, and, with minimal liver damage, he felt he could afford to wait.  The new drugs offer the possibility to treat for half that time, and they have higher success rates.  

I would ask your doctor why he feels you ought to rush.  Also, is he a hepatologist?  Is he experienced in treating Hep C patients?  If so, I wonder why he would not have even informed you about the possibility of waiting for the new drugs. At this point most people think they will be approved in 2011, so waiting, in your situation, is an attractive option -- unless there are other personal reasons for you to want to get started sooner.

Best of luck whatever you choose!

[nygirl7]

Well a few things to remember about taking trial drugs - first as said by Bill there is no guarantee that they will ever be approved although they look good we have seen others come and go before unfortunately - and certainly no real guarantee of when (but you have plenty of time it would appear).

When you take them they will be used with the interferon and ribavirin and carry their own side effects on top of the interferon and riba...for some it makes them too hard to finish the course and they have to drop out.

Also when taking the trial drugs you do have to remember that they come with their own whole big set of rules. Some do not allow the use of 'rescue drugs' like Procrit and Neupogen which can make or break your course of treatment....things like that.

Also, if you do not get the full regimen of drugs and do not succeed - you will NOT be able to use the PIs again.  

But they do give better odds of success for some people (geno1).

I'm not sure why your doctor didn't mention the trial drugs unless he has no access to getting you into a trial or he doesn't know about them (although I bet you 90% of the doctors who diagnose and treat hep just say the same thing "you will start treatment with interferon and ribavirin").

You are in great shape liver damage wise and certainly don't need to jump into anything right away unless you really want to (personally I wanted this disease out of me)....

Good luck whatever you decide to do.

[parforthecourse]

Thanks for all your input. I'm going to call the Dr for sure tomorrow and ask about the drugs that are coming down the pipe soon.
Also  I'm going to get a second opinon from a Dr in Manhattan at Mount Sinani Hospital.

[Bill1954]

Don't forget to dicuss the availabilty of clinical trials as well,

Bill

[Rockerforlife]

Make sure your insurance covers the newer drugs too if you wait for them.If they dont you still have plenty of time to wait even if they dont cover the new drugs as it take usally takes  20-30 years to progress to stage 2,3,4...it took me 25 years to hit stage 2 so dont rush.


"Man has made many machines, complex and cunning, but which of them indeed rivals the workings of his heart?"

[FlGuy]

Mt. Sinai in NYC is the the prowling ground of Dr. Douglas Dietrich.  If that's who you are going to see, you've picked a winner.  One of the leading heptologists and lead on many drug trials.  He knows his stuff and he's been there. There are probably other liverheads there too, but DD's the man.

[GoofyDad]

"I just found out about my biopsy yesterday so I'm trying to get up to speed quickly."
Gee. I knew about mine as son as the stuck the needle in. ;-)  

"Make sure your insurance covers the newer drugs too if you wait for them."
It could be that the insurance companies won't have a published policy on the experimental drugs, with FDA approval, costs, effectiveness and treatment protocols all yet to be established.

Parforthecourse - you certainly have no reason to rush into a decision. Take your time and move slowly - that's my 2 cents.