Aa
Aa
A
A
A
Close
739471 tn?1241715868

Great news on biopsy, but now I am really confused as to what to do about treatment.

Finally liver biopsy back and time to see the Hepatologist this past Monday. I immediately asked for all test results, and even before seeing the Hepatologist got my hands on the biopsy report. Imagine my surprise to see "Grade 2, Stage 2 Metavir score A-1, F1. I about jumped out of my seat and acted like a complete fool! I had in no way expected this, and had been preparing to treat immediately since the Hepatologist had pretty much informed me he thought I had cirrhosis from a low platelet count and what he thought were spider nouvi.Not only that, the biopsy report states porphyria Cutanea tarde could not be determined from this biopsy will forward to quantivie iron determination as requested which I find interesting since I had this 19 years ago.

When going to the appointment with the Hepatologist I had resigned myself to starting treatment almost immediately, now I find I have options. According to the Hepatologist it is up to me when to treat. Now, or I can wait until the new drugs are here. Results were good but at some point I am going to have to treat. His best estimation of when drugs like Teleprivir or Boceprivir would be available would be 3-5 years. I honestly was so awestruck and unexpecting this I had no idea what I wanted to do now! He ended up sending me out of the office with a follow up in 3 months to let me think about it. He suggests that maybe I go ahead and try 4 weeks of treatment, and he says that being geno type 1a, I will know in 4 weeks if I EVR if I have a good chance or not of succeeding, and of course by 12 weeks knowing whether it is worth it or not at all, and then I could stop and wait if need be for the new PI's.

I have been trying to weigh everything here because of my home situation and of course want to give myself the best chance to SVR I can if I try. Some of the questions I have are:

Is there anyway of knowing how quickly liver disease is moving? If I waited for 3-5 years would this put me into stage 3 or even 4?? And then have to have another liver biopsy before treating?

I am 56 now, so 3-5 years from now I could possibly be 61 and would that make SVR more difficult?

I am possibly the healthiest I have ever been right now, and no other health problems, so waiting I might not be that healthy 3-5 years from now so should I treat now?

Is there any chance that Teleprivir could hit the market early? Or any chance of using it without FDA approval?

How long does it take to set up treatment should I decide to treat now, that is with insurance company approval or without insurance company approval? Hepatologist's secretary told me not to worry about this, as if I decide to treat they will work it out some how, but I would hate to be ready and then not be able to treat.

So many questions running thru my mind now, any opinions?

thanks,
LD



72 Responses
Sort by: Helpful Oldest Newest
Avatar universal
Bravo, you see looks 4 , don't let fear play any part in your decision. Or in my my case it was I can take on anything and succeed. NOT!
Helpful - 0
Avatar universal
your biopsy is not bad, you know you are a 1 A , You know there is no cure, why would you poison your body.It made my viral load go down ,while on treatment, but that doesn't matter , as soon as I stopped after 48 weeks ,it sky rocketed higher than when I started.And the treatment has made me permanatly ill.and has effected other organs in my body.Dr. are just people , We have good honest ones & we have those that are in it for the money.Get several opinions & make your educated decision.
Helpful - 0
Avatar universal
Do not treat , wait Dear, you have time . Do not let the Drs. scare you.  Take care of your health exercise now while you can do not drink. and take really good care of your health & wait for a sure cure. I was so sick on this treatment available, there were several trips to emergency room, & I asked my husband to shoot me, I stuck with it , all for nothing, THERE IS NO CURE FOR 1A ,1B
Helpful - 0
232778 tn?1217447111
It can be an effective way to lose weight too :-) I lost 50 pounds in the first month (I didn't really have more than about 20 to lose in a healthy way) I have gained about 40 of it back, but perhaps easier than the biggest loser ranch? Hmmm - not sure about that one :-)
Helpful - 0
92903 tn?1309904711
"personally, I think having a little more wiggle room is a very very good thing"

or at least an inevitable outcome..... ;-)  

Helpful - 0
Avatar universal
Such a shame.  C4L will know better next time not to conduct the orchestra.
Helpful - 0
Avatar universal
LOL. I understand what you say about not treating with the current drugs since you're already SVR but you never know until you try. Right?
Helpful - 0
476246 tn?1418870914
lol... you guys are too funny...

actually doing a little tx now and then could be quite therapeutic. I'd be getting more beauty sleep and would be safe from the swine flu
Helpful - 0
Avatar universal
No Jim I'm not. I thought about it and despite being SVR I am still going to "watch and wait" for newer drugs. I think I have time although you never really know - do you?
Nevertheless I'm still somewhat cynical - I can't help myself.
Patient Mike  - hey that's a double entendre!
Helpful - 0
Avatar universal
Mike: I never addressed the "cured" part. But since you brought it up, your declaration of cured at 1 month post TX is a first I've ever seen here. As a rule people are cautiously optimistic at 1 month and we have invariably shared at least a portion of their arduous journey with them. You show up having already treated calling yourself "cured4life" and declaring you're cured at 1 month post treatment and that puzzles us - as does your "expertise" on myriad issues. And then you try to direct traffic on a site you presumably just joined. All that adds up to confusing or maybe bewildering or possibly cynicism
--------
So does that mean you decided not to take "cured4Life's" advice and at least do 12 more weeks of Peg in spite of being SVR?
Helpful - 0
476246 tn?1418870914
don't you be looking for pegasys and the riba constellation instead now.... ;-)  


Helpful - 0
Avatar universal
I never addressed the "cured" part. But since you brought it up, your declaration of cured at 1 month post TX is a first I've ever seen here. As a rule people are cautiously optimistic at 1 month and we have invariably shared at least a portion of their arduous journey with them. You show up having already treated calling yourself "cured4life" and declaring you're cured at 1 month post treatment and that puzzles us - as does your "expertise" on myriad issues. And then you try to direct traffic on a site you presumably just joined. All that adds up to confusing or maybe bewildering or possibly cynicism
Mike
Helpful - 0
Avatar universal
I'm sorry I have to go out now but that said, I feel confident I can do the original poster some good.

I have to go look at the stars tonight with my new telescope. Hope I can see Pegasus and its adjacent constellation.

Stay well.

Best regards.

Yours, etc.,

Port



Helpful - 0
Avatar universal
You are not doing the original poster any good at all here :(
--------------
You mean like the good you do when you turn every thread you enter into a soap box calling anyone who disagrees with you "harbingers of doom"
Helpful - 0
Avatar universal
Looks4Path (LD) is a Stage One.

BTW, CuredforLife, who weighed in on this thread, is almost four weeks post treatment, which she cut short despite being a G1 with high viral load. She said:


“May 02, 2009 01:29AM in the Hepatitis C Community
Thank you for your words. Several weeks - almost a month now after stopping treatment I feel great!”

"Treatment cured me."

"successfully treated for Hepatitis C this past year."

“If I had not tried I would still be infected today."


Does anyone know if RVR's are sometimes declared cured before four weeks post-tx?
Helpful - 0
Avatar universal
What a relief.
Helpful - 0
Avatar universal
Well, I guess that eliminates any doubt.
Mike
Helpful - 0
476246 tn?1418870914
Deb, the thing is that Look4path is 'only' Metavir stage 1 grade 1, I personally find it not risky to watch and wait for a couple of years with that little damage. The stage 2 grade to is on another scale we don't usually use here on the forum.

all:
I understand that one wants to treat now and here to get rid of the virus. I did not have the 'privilege' to be able to have a biopsy and since I wanted to treat so badly, I went right ahead with it. Being a geno 3, I did not clear at 4 weeks, meaning I had to extend treatment. Compared to a geno 1, I 'only' did 32 weeks. It was a physical hell for most of the time, but I was dang lucky not to end up with any thyroid or Diabetes or any autoimmune diseases post tx. I feel great, just that nasty little rash on the back of my neck left, which I hope will eventually go away, too.

Still, with the knowledge I have now, and if I had little damage I would definitely wait, if I knew I had to treat for at least 48 weeks. Treatment can be tough, really tough, and why would one if one had the choice to wait, deliberately want to do twice the length with less chance of SVR, instead of waiting a year or two. It is a mystery to me.



Helpful - 0
Avatar universal
I had none of this uncertainty when I got my biopsy results.  I was grade 3 stage 3 and my doctor was adamant that I treat immediately.  However, I believe I would have treated right away even if only at stage 2  As nygirl said, "One benefit of treating at stage 2 is if it does not work you have ample time to change strategies and retreat before stage 4."

Good luck, whatever you decide.

jd
Helpful - 0
179856 tn?1333547362
ps One benefit of treating at stage 2 is if it does not work you have ample time to change strategies and retreat before stage 4.  Treatment is a gamble at best and personally, I think having a little more wiggle room is a very very good thing. Of course I was already stage 3 and don't think I had time to wait at all and I just wanted this disease out of me no matter what as the concept of it eating my liver away was just not pleasant to me at all and freaked me out.
Helpful - 0
179856 tn?1333547362
All debating aside it's up to you and you only if you think it's worth treating now as a stage 2 or risking moving it up to stage 3 or 4.  Unfortunately, while it can take 20 years to become a stage 2 it can progress to stage 4 in just a few years - nobody can predict that and it's a gamble.

As for the new drugs - triple therapy can be shorter but harder and nobody is 100% sure that they will ever be approved. Personally for me combo treatment was hard enough.

If you do decide to watch and wait you are going to have to remember to do a lot of watching....it's not as if you can just stick your head in the sand and let it go.

Since you were already resigned to treatment my personal advice would be to go for it now while you have things set in motion.  At week 4 see how you are responding. If it looks like you're really succeeding then go for it.  Why wait until your liver has degenerated a couple more stages and it is harder to make sure you get all the virus?

Helpful - 0
338734 tn?1377160168
I can empathize with the "damn the torpedoes and treat now" approach. That is basically what I did, but I felt I had to given the situation I was in. I would not do any differently now if I had it to do over again.

For a case of genotype one,liver damage at stage two or less, working on original equipment (liver), and no particular reason to think the disease would progress rapidly, I would probably choose to wait. 12 or 24 weeks of treatment sounds a lot better than 48, 72, or 84 weeks of treatment. Not many geno 1 patients get off with the 24 week treatment.
Helpful - 0
388154 tn?1306361691
Its easy to be pro exposure of interferon if you feel good after treatment.

After my first tx that lasted for 24 weeks i felt better than in 25 years both physically and mentally allthough I relapsed.

Thats what motivated me to do a second tx try, more agressiv both with doses and with double length of time .
Now  5months post i dont feel good at all not physically nor mentally.
I´m afraid this meds hasn`t been around so very long, so we still know all to little about its impact  and long term effects if exposed to it longer times and with higher doses.

My old man used to say there aint no such thing as poison only poisonous doses.

If this doesn´t get better I´ll find it hard to be happy even if SVR which I will know  if I am in a month.

Keep in mind that I was grade 1 stage 0 in my biopsy taken 2 months before second tx ,and I have had it for 36 years and been drinking heavily and taking lot of drugs but not any  of it for the last 22 years.
I really hope I will feel as good or even better than after first tx and that it only will take a little longer this time compared with the shorter first one.

Its easy when you your self only have good experience after treatment to think that those how complain about problems long after treatment probably are a bunch of hypochondriacs.
I did but now my own experience this far are shutting that up!!

ca
Helpful - 0
Avatar universal
Maybe I will. You know how much I love to treat. I lose weight every time and I could drop 15 right now. I know I have some Pegasys on hand.
Mike
Helpful - 0
Have an Answer?

You are reading content posted in the Hepatitis Social Community

Top Hepatitis Answerers
317787 tn?1473358451
DC
683231 tn?1467323017
Auburn, WA
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.