4 Week Results

[RCM829]

I just got my 4 week results and would appreciate any feedback. I am disappointed.
I am a 3A genotype, early stage 2, grade 2, I have had Hep C since 1971 and have no symptoms and feel O.K. Ultrasounds and other blood tests appear normal.  I was a previous non responder to PegIntron therapy in 2001. At that time there was a drop in VL from 520,000 to 150,000 at 6 months  so we stopped treatment. My ALT went from 119 to 39.
Because I had-so I thought- good chances for clearing Hep C I decided to retreat with Pegasys/Ribavirin and started Feb. 15. VL at start of TX was 117,000, ALT was 57. At 4 weeks, my VL is 95,000, ALT is 33. I am obviously not responding to treatment. Does anyone have any experience as to whether it is worth doing the full 12 weeks (and hoping for a 2 log reduction in VL) or whether the 4 wk VL result is an adeguate predicator for stopping treatment, especially in view of my previous treatment failure. I've heard that a significant drop in VL at 4 weeks is necessary for previous non responders in order to indicate a successful outcome. Any insight is really appreciated. I am tolerating treatment well with few SX. Thank you.

[RCM829]

copyman-  I'm frustrated too and certainly understand time is of the essence here.. My doctor is very familiar with  Alinia  and is contacting one of the principals of the Alinia study to see if its use would be appropriate for me.
I'll do anything I can to reach SVR.
Again, you guys are terrific on this forum! Appreciate the knowledge and support!

[copyman]

So what you are saying is your dr is against you beating this disease. HCV is a very resiliant disease and treatment has to be tailored to fit everyone. Obviously what the dr is doing now is not working! Something has to be done fast to knock down the virus. Even if you up the Riba until 12 weeks to erradicate then lower the dose if need be. If your doctor will not do this then find another doctor that is willing to follow latest protocols, a Hepatologist would be the best bet. Remember this is YOUR life at stake, not the doctors!!! Best of luck

[RCM829]

My dr. was against it but we upped Riba to 1000 mg, At my weight (59.5 kilos), that's 16.80 mg- per kilo (if I figured that out correctly) ; a lot for a G3A. My HGB at 4 wks was 13.7 so I figure we've got some wiggle room. Lots of good info on these forums-the most educated I've stumbled upon yet.

[copyman]

I would up the riba to 1200mg per day and add something like aliana to the mix.  I would NOT continue with the present dose. Check VL again at 8 & 12 weeks. Stop at 12 weeks if still detectable and wait for the new drugs. Of course don't do anything without your Dr's consent.

[RCM829]

Already faxd  packet ahead of time pretty much as you described. I may not keep both appts., we'll see how first one goes and if 3rd opinion is necessary. Again, thanks for advice....

[jmjm530]

Hopefully you'll get a consensus that makes sense to you. Just make sure you bring all the stuff with you such as blood tests, ultrasound report, biopsy report, etc. Some docs actually like to see the original biopsy slide set, so you might call the office(s) ahead and see if they want those. I've also found it helpful to more or less summarize everything on a single type-written sheet of paper that gives your stats, prior treatment history and current treatment with all viral load tests noted by week.

And, of course, have your questions printed out because it's easy enough to walk out of the office without asking the most important questions, such as a specific plan moving forward based on viral response.  I've done it myself when I tried to keep it all in my head.

[RCM829]

Got 2nd opinions lined up over next few weeks with Dr. Poordad at Cedars in L.A. and Dr. Hassanein at UCSD (mentioned favorably on this forum several times) so we'll take it from there. Kaiser wants to keep treating to 12 weeks. Again thank you for all your good information. You make sense and you have helped. I do appreciate it and I will keep fighting! Robert.

[jmjm530]

Gish has a good reputation. Maybe you can get to see him on an emergency basis if you can get by the appointment secretary and explain your position to the office manager or nurse. Sometimes the doctor will even get on the phone or return calls if you luck out. Whatever you do, you need a plan and don't just want to keep going with for the sake of keep going. Good luck!  Jim

PS Meanwhile probably wouldn't hurt to run your whole scenario by Dr. Dieterich in the Expert Forum for a small fee. Don't know how far behind he is, but worth a shot.
http://www.medhelp.org/forums/show/272

[RCM829]

Jim-
Thats kinda the feed back I was looking for and I thank you for it.
HGB went from 17.8 to 14.3 so Riba seems to be working. (weight based for me is 800 mg.-I am a runner and therefore pretty thin at 135 lbs)
I was not tested for IR but will mention it to my doctor.
Unfortunately I am with Kaiser Permanente currently through my work and am seeing a gastro. They are NOT who my choice would be but I have seeked second opinions (out of my own pocket) prior to starting this round of treatment. Both of these (one a well known liver disease center in L.A.) felt I should just retreat as my chances-to them-seemed very good to clear. No one mentioned other options except of course waiting for better drugs.
I may seek out Gish in S.F. (again out of pocket) for a consult over the next few weeks as I hear his name mentioned on these posts often.
Again I thank you so much for your reponse. You certainly nailed my available options.

[jmjm530]

Yes, you're not responding very well. Less than a one-log drop. At this point you have three main options - - (1) continue on as is and test at weeks 8 and 12; (2) try and identify with you doc what isn't working and change it; (3) cut your losses, stop and fight another day with better drugs.

We're not doctors here, but I don't think #1 option will bear much fruit especially in light of your previous tx history. As to the second option, are you hooked up with a good liver specialist who can try and figure things out based on your entire chart?

Some things to look at might be your hgb drop from pre-treatment baseline. If it wasn't at least two points then its possible you are being underdosed with ribavirin and it conceivably could be upped. I'm assuming you're on weight based riba anyway -- you should be especially if this is your second go around. Another factor is insulin resistance (IR). Were you tested prior to treatment? If you're IR, then you might want to discuss this with your doc although the study in question starting dosing at the beginning of treatment :
http://www.hivandhepatitis.com/2008icr/aasld/docs/112108_a.html

What I don't think you want to do is keep continuing like last time past week 12 with detectible virus, but again we are not doctors here. Hopefully you're seeing a hepatologist (liver specialist) and not a gastro. A liver specialist would be better qualified not only to guide you in terms of a decision but to get more creative this time around.

-- Jim