Newly diagnosed

[tre56]

Hi,
I'm 53 years old and was recently diagnosed with Hep C.  I'm genotype 1 (don't know any subset), VL 819,000.  Liver enzymes are normal.  Liver biopsy showed grade 0 and stage 1.  I see my hep doc again on Dec. 11.  He's great and has been doing this 15-20 years.  He said we would decide together about treatment, as it is my body, even before he did the biopsy.  He said if I had minimal damage he would probably recommend watching and waiting for the new treatments, but he understands that some people just want it treated no matter what.  Since the side effects are so serious, he said one has to really consider all factors if damage is minimal.
I've been reading some of the posts and I want to get some advice on whether I should wait or treat.  I have no other health problems; I've been lucky in that respect.  I don't drink but I do smoke.

At first I thought I must have contracted Hep C years ago (like 20-30) when I was an ICU nurse.  No drug use and no blood transfusions.  I did have dental work in Switzerland (extensive) about 3 years ago as I had an emergency while traveling.  So maybe I've had it a long time and maybe I haven't.

It is great reading the posts of everyone; I was shocked to hear I had Hep C and now I'm just trying to make smart decisions.  I was really afraid at first, but I'm learning each day to handle it better and press on.  

Thanks,
T

[epiphiny]

Hi and welcome to the forum! As you have very little damage you could definately afford to wait for the newer drugs that are currently being trialed.  Advantages include, hopefully, a shorter treatment time and higher rates of success. There are many who advocaate the wait and watch approach.

I think it all depends on how YOU feel about having the virus.  Does it bother you to know you have an uninvited and unwanted guest or do you think you can co-habit with it a bit longer? Or is the knowledgr wearing on you psycologically?

Do you think having the virus has an impact on your daily life right now?  For me, when people would ask that question I would always answer "I don't know" as I had had it for so long that I couldn't remember what it was like to not have, but I always felt 'not right'.

Now that I am done with treatment and I'm regaining my life back I am amazed to find how much more energy and enthusiasm for life I have now that my body is no longer fighting off the invader.

My first treatment was unsuccessful and that was a very hard experience.  My second treatment I was fortunate enough to be in one of the trials for the new drugs and I have achieved SVR.  I'm glad that I treated and that I have rid myself of the virus and I still have plenty of time left in my life to enjoy living without the shackles of the virus (I'm 48).

It also depends on your circumstances.  Perhaps now is not a good time for you to treat as it will definately mpact on your relationships and your working life.  Or perhaps it is a good time in your life to consider treating, you may have a great insurance plan or the right support right now.

It is such an individual choice, all you can do is take your time and do lots of research.  Decide what things are important to you and in what time frame.  By the sound of your post you are already doing that and I encourage you to keep on.  I believe you will 'know' what is the right choice for you to make.  The best thing is there is really no need to rush into anything.

Epi.

[tre56]

I've read about some of the trials and noted that they often want people who are treatment naive.  That made me think maybe I'd have a better chance with the new drugs if I hadn't had treatment before.  I know geno 1 doesn't seem to respond as well as 2 and 3.  Also, I guess I need to find out what subtype I have, right?

Thanks for your quick response.  It is a lonely feeling to have this disease and not know who to talk to.  I think I found a gold mine with this site!

I'm so glad you achieve SVR; that is awesome!  

Do you know names of drugs that are finishing trials that work well on geno 1?  That way I could research them!

Thanks so much again for responding.

T

[Bill1954]

Hi Tre—

It sounds to me as though you’re getting sage advice from your doc. With minimal fibrosis, you have the luxury of choice. While there have been other drugs in trial that have failed to make the shelf in the past, both Telaprevir and Boceprevir are in very late phase three trials, and their eventual release appears imminent.  

I personally tolerated the treatment fairly well; it took a couple of tries for me to get it right, so it’s a good thing I took to them well.

Others aren’t so lucky; I’ve seen patients get pretty ill from these drugs. If you can manage to coexist with the virus for a bit longer, it’ll probably serve you well. You do understand that the new protease inhibitor class drugs will initially be used adjunctively with the current interferon and ribavirin, correct? They appear (at least in trial) to increase the efficacy of treatment from roughly 45% to over 70% for GT-1 patients, and might possibly reduce Tx duration from 48 to around 24 weeks. Pretty cool time to manage HCV; we’ve never before had so many options to deal with.

Welcome to the discussion group, by the way; and good luck—

Bill

[epiphiny]

Yes I know that lonely feeling well, and this place is a definately a gift!  Good on you for considering trials, that is definately the way I would go.

Bill has named two of the main contenders there but there is also another drug that is only just heading into Phase 2 trials but is showing superb results - R7128 by Roche.  I did the Phase 1 trial and it sure did the trick for me.

There also studies being done using protease inhibitors, combined with the ploymerase inhibitors (R7128) and Ribavirin that are NOT using Interferon.  My doctor, Professor Ed Gane has been presenting the results from these trials at the Boston Liver Conference and he is very hopeful that non-interferon based treatments will be available in about 5 years or so.  With your minimal damage you could definately afford to wait if that was your inclination.

As Bill has said, this is a very good time in the treatment of HCV.  Not so ljng there were barely any options and only a 30% chance of clearing!

If you don't already have it, here is the link to the clinical trials website:

http://www.clinicaltrials.gov/ct2/home

I spent ages researching and it really empowered me.  Plus I was blessed to have such a brilliant doctor who actually got me on the trial and made the right choices at the right time.  Foster your relationship with your Doc, you could even explore finding a Hapatologist in your area....

Epi :)

[epiphiny]

Correction:  That should read Hepatologist :)