Told I need to extend tx to 72 weeks

I finally made it over the hump and was all excited going in to see the doc this week because my VL came back undetectable, less than 5. Well, instead of him being excited, he went through the statistics for when you convert to undetectable and if you achieve SVR. He then told me he wanted me to extend the tx from 48 weeks to 72. I feel like I don't have a choice and as long as I'm feeling OK then I'll continue. It really put me in the dumps. I was on the downward slope and now I'm back to not even being half way there. My Hg and Hct are dropping again. I convinced them not to start the Procrit (he normally starts it if you go below 10 and I was 9.9). Well, now I'm down to 9.6 and 28.4. My chest gets tight if I walk up any kind of an incline so I guess I'm not getting enough oxygen to all the important places. Might have to just go ahead and start the Procrit. Do you get many side effects from that? I've been real lucky with very few problems from the others. I've been on Neupogen almost the whole time cause me white count dropped to 1.3. It stays about 2.7 even on the Neupogen.

I started out with a VL over 9 million. After about 12 days I was down to 430,000. After four weeks it was 51,400. At 12 weeks I was 33. The doc at that point told me he considered that undetectable. One thing that got messed up is that the machine broke down for over a week so I wonder if that result could have been false. So then the next one after 26 weeks was undetectable, or less than 5. So because I didn't get to undetectable until week 26 (although I bet I was sooner than that!) he's extended tx. My only real problems are that I'm tired. I haven't missed any work. I work two 12 hour days and an 8 hour day all in a row and then I have four days off so I can recoop. My hair is falling out. I've probably lost 50% of it. That's not much fun but I did get it cut way short today and also found a wig for when it really bugs me so I can handle that.


So is it real common to stay on tx for 72 weeks? Do the side effects start to even out after a while? Does your hair keep falling out to the point of seeing scalp? What are your thoughts about starting on the Procrit?

Thanks for any feedback you can give me. Ricki

[redrodeo]

Ricki,
    I used the procrit and didn't experience any s/e's. I don't know how much it helped either. We ended up lowering the riba dose anyway.
    I totally can understand wanted to stop this stuff. Its nasty. I had geno 3a so I only did it for 24 wks. But my md wanted me to go 48 because of the cirrosis (cirrhosis). But I couldn't do it. Fortunately I've remained und so far 4months. I would have gone longer if I could but I just couldn't. I was undet at 3 1/2wks which was a good sign. Considering the way your numbers have jumped around goe as long as you can and turn the rest of it over to God.
      Red

[Willie29]

Ricki,
I just completed a 98 week treatment of ribivirin and peg. This was my third attempt at obtaining an SVR. I am waiting on my 6 month results as we speak. Whatever you do, do not get off unless you are almost dead. You increase your chances going every extra week. Brian

[FloridaMouse]

Stick it out 72 weeks if you can.  The more the better when it comes to a geno 1. Especially if  you have a higher degree  of liver damage.  I did 48 weeks from May, 2006 through April, 2007, relapsed in September, 2007 and am currently 38 weeks into my second round of which will be 72 weeks.   Had I gone 72 weeks the first time and still relapsed I would not be putting myself through a second round right now.

Basically I've been on treatment for over 2 years with only a break of 7 months.  The sides have persisted but do seem to hit a plateau.  At 38 weeks I can tell you that  my hair loss has not slowed down yet.   I am taking Aranesp for my hemaglobin which I did not need during the first round.

Mouse

[Trinity4]

If you look on my profile, I did not clear at 12 wks either.  I will have to go 72 wks as well if I clear at 24 wks.  Won't have that PCR for another couple of weeks.  My doc is behind the curve on treatment durations for slow responders and I will have to plead my case with him to extend because he just doesn't know how important it is for us geno 1's to treat 72 wks when we aren't UND by 12 wks.  Never in my wildest dreams would I have imagined myself begging someone to please let me extend this hell.  But as Mouse said, I'd rather get it over with the first time because I won't do it again.  Odds with current SOC just aren't good enough for me.  If I do extend and don't clear after 72 wks, I'll wait for the new drugs.  I'm at stage 3 so don't have alot of time to wait around.  It seems like an eternity to treat that long, but if I beat this thing I get my life back and can watch my grandkids grow up.  That makes it all worth it.  Stay strong.
Trin

[GrandmaBRZ]

I certainly empathize with what you are going thru.  I was told I had to go 72 weeks which did not make me happy but I am now at week 60 with only 12 more to go so I am sticking with it.  I do feel much better than the beginning and middle of treatment.  My hep has now told me that because I wasn't und until 16 weeks, have cirrhosis & am a slow responder, they would recommend that i go beyond the 72 weeks.  That was not thrilling news.  I have not made a decision about that yet.  Procrit has helped as well and now that I am at 13.3 I no longer have to take it. I agree so much with Trinity that it is about getting our lives back.  Take care and I hope you stick with it.

Jennifer

[Rockerforlife]

It would be great if they allowed us to throw is a  protese inhibitor with this SOC tx...i know they are waiting for the trial results and stuff...BUT....i think we need this NOW

[Marc1955]

Trinity4 – In my situation, I didn't even clear at week 24. I had a low but detectable viral count of 50. It now looks like I've cleared at week 28. I definitely needed to argue with my doctor and convince him to let me continue. Fortunately he's a heptology researcher and he has latitude with treatment options, so if I want to go 72 weeks or even longer he can get my insurance company to cover it.

What I've learned is that there is essentially no one who has the complete picture of treatment options. Everything is too in flux. So you need to advocate for yourself, be informed, and hope for the best. I wish it weren't that way, but I guess that is the way it is with a lot of challenging and relatively recent treatments.

Good luck. I sure don't look forward to 72 weeks. I feel like c**p and it strains my relations at home. But it seems to me like the wiser course than stopping treatment and waiting for an uncertain future.

[ADESI]

    I was told by my G.I. to extend as well and I cleared in 2nd month of tx.
Any undetect after week 4 is considered slow responder and definitely @ week 12 even w/ low v.l. you are a slow responder. Check out studies
Berg , Sanchez-Tapia, Pearlman so you can get a better idea of your ststistical chances.
Personally I would hate to go through this for a year and not acheive SVR, I would always be thinking I should've stuck it out.
  Oh yea,I still have'nt decided whether I am going to extend out or not , on week 43
and t.x is getting harder to handle not easier.

[JackABCD]

Vould u pls provide the address for the research you mention ?

[oretiredone]

This is the first time I've logged on, and I certainly learned a lot.  I just started interferon + ribavirin for the second time.  The first time I went for 4 1/2 years on alpha interferon,and another 1 year on the combo--which was the worst. I have cryoglobulenemia along with the hep c.  Do any of you have that?   I've been off the interferon for about 6 years now, but continued ribavirin because it controlled my severe vasculitis from the cryo. Enzymes creeping up again, and my doctor finally talked me into trying the peg out.  Very reluctant, and after two weeks, I'm feeling really awful.  How do you all control the symptoms?  With the old alpha interferon, at least I could guarantee 2 and sometimes 3 decent days a week;  with this stuff, I never get a whole good day.  

[ADESI]

voogle et pls

[Marcia2202]

I think you are confusing different genotypes. What you state applies to genotypes 2 and 3, but not to genotypes 1 and 4.

Marcia

[Marcia2202]

Another correction.... geno 1 & 4

reaching UND by 4 weeks is called RVR - rapid viral response
reaching UND after 4 weeks and by 12 weeks is called EVR - early viral response
If not reaching EVR, treatment should be prolonged.

geno 2 & 3

If not reaching UND by 4 weeks, treatment should be extended for at least 24 weeks after having reached UND and up to 48weeks. If not UND by week 12, treatment should be discontinued.