To Treat--and how to treat--that is the question

[GreatBird]

Hi MedHelpers .  .  .

I am recently back lurking (and slightly posting) at this board trying to catch up on what is going on in the world of hepc tx. Here's my basic history . . .

Female, 53 (okay almost 54)
1b, had the virus at least 35 years (maybe even 48)
last bx in 2002 (I know, I know but my dr. doesn't see a need to repeat) was stage 1, grade 2
VL is usually around 300K (was once as high as 1million and once as low as 74K)
LFTs were always normal until 2002 which prompted the dx, now they are usually in the 50s/60s
platlets always around 300

I'm basically healthy. If the dragon doesn't sleep, mine at least seems to be resting, so I've been reluctant to do anything that might **** it off. Plus, my job, my family, my life has been so busy that txing generally seemed like a bad idea what with the SVR rates for my geno.

But now . . . my life has quieted. I might have a good sized window of opportunity to tx. I am discussing the Vertex trial with the good nurse in charge (and I like her a lot). So I come to this board to check things out and I see traces of information on things like Alinia, PPC, and I'm wondering what would be my best course of action.

Should I wait or should I go . . .

If I get on the trial there's a 33% chance I won't get the Vertex. That doesn't mean I wouldn't clear. (It does mean I wouldn't get the vertex rash ;)  ). No rescue drugs. SOC drugs free and bloodwork etc. (I do have insurance--they would expect me to use it for various sx doctor visits.)

So I'm interested in the group wisdom here. I know there is lots of it.

[Upbeat]

Most people on this board would suggest treating.  I am from the other camp. If its not broke don't fix it.

                                                                                                            Ron    

[Mary4now]

HI, I'm 58 and considering the trial as well, I have never treated geno 1, stage 1 grade 1, So I am going to ask my GI/hep team to keep me posted on a good trial.  
I was dx in Jan 2008, and have probably had it 30 + yrs. who knows.... My life is constantly in flux, but a trial would guarantee the SOC and my insurance runs out next month.... so good luck on your end deciding...

[rita863]

I am 44 Geno 1 am treating with Riba and Inter,  I am at week 26, i was UND at 12 weeks, have had some sides, some mild some not so mild.. I have been working full time since treating with just some sick days.   My liver biopsy was state 2 fibrosis.

My doctor said that while i was in good health, treat/

My brother who also has hep has taken the other approach, if isnt broke dont fix it.

Its a personal decision but if you read my journal i  have listed pro's and con's

good luck

peace
rita

[GreatBird]

Thanks for responding.

rita, I think your pro/con list is excellent.

I'm mostly interested in information on the Alinia. I can't find that it's going to clinical trial anywhere. Doesn't sound like there's a real protocol developed with it yet.

And then the other stuff...lactoferrin? PPC?

[Marcia2202]

Hi, I'm 43, geno 3, VL 580K and have had hep c for ca 25 years. Dx in March and have not had a biopsy, yet. I am planning to start tx sometime in August.

I believe in treating and not waiting. At least in my case... after having weighed out all the pros and cons. Of course, I cannot speak for others. Dr. Dieterich's presentation also inspired me to take the treat as soon as possible approach.

mssmtv.org/player_alf/player.php?id=alf_2007_01

Regarding Alinia, PPC and lactoferrin, it has been discussed in several threads during the last few days.

medhelp.org/posts/show/554160

medhelp.org/posts/show/554438


Hope this will be helpful,


Marcia

[giddyup]

hi it's been a long time . I, currantly on tha alinia tria which has a 6 wk pre dose plus soc. 1.5 log v-load drop at 4 wks. previously did peg and piba and also infergen for 48 wks during wich the virus left and returned. although things are going pretty well every day is a struggle. My docs are teating me because ima 3-4 in damage with signs os varices.I think if my liver were in bettter shape i would wait to see what they learn in the next couple of years.but as you know there are many factors to consider.perhaps this is a good time in your life to make the committment exc, I can tell you i'm better at it now then ever-giddy age 44.

[GreatBird]

Well, the plot just thickened. I got laid off at work (which I was expecting) so that window just opened real wide.

I think I'm going to go for the Vertex and not wait for the Alinia.

Thanks to everyone who commented and provided links. :)

[willing]

good to see you posting again - I remember, when I can remember that is, your posts from  the distant cow-tipping days. Anyway, sorry about the layoff, but it seems like the perfect time to jump out of that open window.  The stage III trials for the two NS3 PIs (Vertex/Schering) do seems the best option for  tx-naive at the moment. You might want to compare the trial layout of the two and see which one gives you the least chance of getting either placebo or underdosed soc before committing.

[jmjm530]

You've had the virus between 35 and 48 years and you're only stage1 and asymptomatic.   It appears that in your case HCV is very slow moving.

Studies show an inverse relationship between age of infection and fibrosis infection (slower progression if you were infected younger) as well as female gender (females progress slower).

All this is to your favor, and it's possible you may never have to treat should you decide to watch and wait which means among other things monitoring liver fibrosis on a regular basis either through biopsy (every 3-5 years) and/or through non-invasive means such as Fibroscan when/if it gets FDA approval.

That said, newer drugs are always evolving and the new kid on the block today may be  the SOC of tomorrow, meaning that newer treatments down the road may potentially  be shorter and less toxic than even today's most promising PI's. And certainly, if you did want to treat with today's PI's (showing better SVR rates with half the treatment time) I see no reason to jump into a trial when you have time to wait until these drugs become FDA approved. That way you would have not only the benefit of full trial results but would not chance trial restraints such as a placebo group, no helper drugs, etc, etc.

"UpBeat" said it better and shorter: "If it's not broke don't fix it".  You say your life has "quited" some. Maybe time to start a new hobby, fitness program, take that trip you've always dreamed about. But not the interferon/riba trip IMHO :)

All the best whatever you decide.

-- Jim

[Fl_Gator]

I am currently enrolled in a Vertex trial. I was told that some of us will be pulled off meds at 24 weeks....they are certainly looking to shorten the duration of the treatment so if you have time to wait till this new drug hits the market, it may save you 6 months of meds.

[moahunter]

I think it is hard to find group wisdom, as personalities differ. For me the decision was easy, as I was acute (hence higher odds to treat straight away), and I also got sick during the acute stage (hence, I know a little of how bad liver disease can be).

For yourself, the mere fact that you are considering treatment suggests to me that you are not comfortable at the moment, whether it be some tiredness, or just the idea of the virus. If you are a "controlling" type person, I think treatment is a good option. If nothing else, I think it is worth trying, say, 4-12 weeks of treatment, to see how you respond. If symptons are manageable for you, and you respond well, you may choose to carry on. If not, there is probably not much downside to having tried a short period of treatment (although if you trial with newer drugs there could be resistance concerns).

Good luck, whatever you decide. Treatment was the right decision for me, I have a lot of energy now, and am hoping for a SVR verdict soon (touch wood). I didin't find it easy at all though, so I can understand if you decide otherwise.

[moahunter]

Whoops - just read you are in vertex trial (doh!). Good luck with it, I think treatment is a good choice, at least to try.

[moahunter]

Doh-  double doh, - not you in vertex, but FL_Gator. What's wrong with me today, maybe the drugs did mess up my brain:-)? Good luck whatever you decide anyway.

[GreatBird]

willing--yes I do go back to those cow tipping days. :)  I'm in agreement about the jumping out a window. Or at least sizing it up. I'm not that good with heights, you see, so if it's a first story window that's a completely different thing than a tenth story window, yanno?

jmjm530--I've always been of the "ain't broke don't fix" school myself. But . . . in about a year and a half I'll be out of health insurance and I'm not willing to have HCV without health insurance. That's something to consider. Oh and my life being quiet? I have *plenty* to do. Which is why I was thinking that before life takes off on me again, it might be a good idea to do my best to get rid of this virus.

Fl_gator--do you know what the criteria is for pulling people off at 24 weeks? I'll have to ask the nurse here (I'm making a list of questions), because I would be MUCH happier to only treat for 24 weeks--of course assuming that there's a great chance I've cleared for good.

moahunter--I prefer to think of myself as a planner (over a controlling type). ;)  Which is why I'm trying to fit tx into my life and posting for the group wisdom.

It's very interesting that since I first started coming here in 2002 this board has become much less pro-tx. It used to be that folks would jump down someone's throat if they suggested a wait-see approach. It seems things are more balanced here now.

I do understand how the cure could end up worse than the condition, at least in my case. That's why I'm cautiously assessing my options.

And I thank you all for posting and helping me with this difficult decision.

[Fl_Gator]

FYI....Depending on the level of HCV in your blood