Dr. suggests quitting tx

Bad news.  I am in week 40 and my Dr. is suggesting I stop the Int/Riba.  My VL is still at 200 and he doesnt' think that is good enough.  I started tx last August at 7.5 million and it has gone down with every check up as you can see.  I am obviously responding, just at a slower rate than anticipated.  He sent me home to make an appt. with Dr. Jeffrey Weinstein at the Liver Institute at Baylor in Dallas.  Told me to stay on protocol but that he didn't want to prescribe any more meds until I saw a specialist.  I have been doing this for 9 months and am all the way down to 200, why in the world would my gastro want to stop now.  I know all the stuff about supposed to be undetectable at 6 weeks, 14 weeks,......he let me go this long, why call in the specialist.  Just because I am a slow responder.. doesn
t mean I'm not responding and quite well I might add . I   still have fight in me and yes my blood counts are low but Aranesp is taking care of that.  Way confused.  I read on this site people who have been fighting for 72-92 weeks.  Any advice/help would be very much appreciated.  I am sick at heart!!  

[albany]

I can understand your panic, if you have held in there until now, why stop.  Get more informationa d keep up until told otherwise I would suppose.  I can probably look in your profile, but are you in Canada or USA.  Myself I am Canadian and notice that when I asked my Dr / Tx nurse about the possibility of extending Tx ( was "almost" 2 log drop at 12 wks) they said they would look at it at the end of the 48 weeks .. ubt not liekly.  Only explanation I have got is that things are different (more advanced?) in USA.
Just a thought
Hope all is well for you
Albany from Ontario
G1A- on wk 37 of 49 with Pegetron

[ladywhy]

All i can tell you is what my hep dr. advised. At 25th week still had a vl though it continued to go down. Instead of stopping (which I was quite ready to do) Dr. prescribed double dosing pegasys. Did that and became UND at 55 weeks. At the 10th week we upped riba from 1000 mg to 1400. It's a very good thing you will be seeing  (hopefully) a hepatologist. He/She might want you to switch from Pegasys to Pegintron or even possibly daily Infergen. My dr. told me I have around a 70% chance of SVR. I figured for me...why stop for awhile, then start again as the vl multiplies and at that point my system was tolerating these toxins? If you do continue, I would think there should be some changes in the meds. These are just some ideas you can throw out there when you make that appt. I can understand how frustrating it can be to have 200 stragglers and going through what you already have is no doubt very difficult. I understand. The hep dr. may even want you to get into a clinical trial...anything is possible. Don't give up hope debster, it's gonna be ok.
God Bless You.
y

[copyman]

sorry i have to agree with your doctor.  VL being detected at 24 weeks gives you like a 2% chance of clearing. Not sure but i think if you are a slow responder but unde between 12 & 24 wks you can do 72 weeks with a decent chance of SVR. but i think you would be classified as a NON -responder because your were still detected at 24 weeks. so i agree that you have actually been treating way to long, should have stopped at 24 weeks if virus still detected.. one good thing is you gave your liver a much needed break for 40 weeks and hopefully if you had any liver damage it regressed some. best of luck

[MKAndrew]

Okay, here's the problem.  If you keep taking interferon, and eventually clear, you'll need to continue taking interferon for another six months.  Why?  Because 48 weeks of treatment is presuming you are undetectable (<5 copies) at week 24.  That means doing at least six months of treatment after you become undetectable.  I hate these numbers, because I've had brushes with partial response, and I don't want to discourage you, so here's a compromise alternative.  If all your labs are good, and you're still good to go, and you think you can stand it, ask your doctor if you can switch to daily Infergen 7.5 mcg + Riba.  I'm not a doctor, but the numbers point to continuing therapy for another six months after you become undetectable, and Infergen has succeeded where other IFNs have failed.  Best of luck to you.

[JennyPenny]

Why so low buddy? I did the 15 mcg daily after 8 months of the old combo. Course, it didn't help me, but it has helped others.

Love, Susie

[HectorSF]

Copyman is correct. I am sorry to say this but there is no use in continuing treatment. The Hepatologist with tell you something similar so please talk to him about this.

After treating for 24 weeks and not being undetectable, you have basically no chance of clearing the virus. You have to get to the pint of the virus beng undetectable first to ever have a chance of clearing the virus (SVR). I am not sure why your Gastro keep treating you? Maybe he doesn’t often treat Hep C patients and doesn’t understand the standard protocols for evaluating your response to the Peg/Riba?

Technically you are not a “slow responder”. A “slow responder” is a person who’s viral load goes from less than 2 log to undetectable between weeks 12 – 24. You are a “non responder” but what sub-category you fall in? "null responder", "partial responders"? We would have to see your VL results at week 4, week 12, and week 24 to know.

You will need to find out why you didn’t respond the treatment this time so you can possibly retreat in the future.

Best of luck to you.
Hector

[zazza]

I am one of those people on the forum who treated for 72 weeks. I am a slow responder, i e I had more than a 2 log drop by week 12 and was UND by week 24. Actually I became UND already at week 15, and thus I was UND 72 minus 15 equals 57 weeks. I hope this gives you a perspective of how long one may need to treat after becoming UND. I have read theories about the liver cells living longer in slow responders, thus we would need additional time being UND compared to early or rapid responders.

[sandal41]

well i have to say this is all very disheartening. i did pegintron for 12 weeks before going off it completely.

and the pegasys i have been on since dec so it's been 20 weeks. and i'm still at log 5.4.

does that mean i shouldn't really waste any more time? i see the doctor on the 11th. i just want to be ready to give up if he tells me to.

seems to me, that reading this site, the treatment is worsening my liver when i go off of it and it's not doing me any good. actually seems to be bringing me closer to transplant instead of the other way around.

[nygirl7]

Actually you're very fortunate your doctor gave you so much time - they usually stop you at week 24 if you have any detectible VL in you.

Continuing to 72 weeks most likely isn't a real viable alternative. You would continue IF you were negative by week 24 - so at week 40 you are well over that.

Given the true amount of how much damage these poisons do...if they are not working for you there really isn't any reason to keep taking them. Right now your odds of getting SVR are pretty much close to zero.

You'd be much better off stopping - taking time to get your strength back and then redoing treatment maybe adding vertex in a trial or making sure you are getting enough ribavirin (I don't know how much you were taking but you may have needed more) .

As a person who did 72 weeks...you really need to be UND for quite a long time as zazza said...and since you aren't technically even a slow responder - I'd say stop, regroup, see what went wrong and if there is a better alternative.

Sandal - I'm sorry I don't understand what you are talking about having switched from pegintron to pegasys?  Can you remind us old fogies what your stats are? However if you read above it's very clear who is a candidate to extend and who is not. I extended because even though at week four I ONLY HAD 400 and we thought I was a rapid responder...at week 12 I still had the 400 count. Which is close but no cigar. By week 24 I was Undetect down to 2 copies sensitivity so I continued to 72 weeks and achieved SVR.  Had i had a viral load count of even 5 at week 24 - I would not have continued.

It all sucks. It really does and I'm so sorry.

[sandal41]

i'm sorry, i was so sick with the first treatment, the two months of july and august are a blur of bed.. so i don't know what happened when.

my initial vl was 32M. i remember that. and it went down to 250K on the pegintron with riba 200mg, 8 pills a day.

then i needed a blood transfusion because the meds made my body shut down and stopped making blood. so after playing with the needle and riba/off one week/on one week/etc, they just took me off all together. i had lost 60 pounds, all my hair and wasn't able to work.  

i was given a biopsy which said i was a 2, and then 2 years later got another. i was 3-4. so i went to a new hcv center in nj that had just opened up by a few doctors from temple university hospital and lordes.

he decided he would try me on the pegasys. riba/200 mg 6 a day.

we've been doing that since december. my inital vl was 25M but like i said, i didn't track well.  but my numbers kept going down.

march numbers were 255K and 5.41 log but in april they were 267K and 5.43 log.  so he put me on 2 injections a week of pegasys. i go to see if that did anything in june.

what he told me was "he was going to be more agressive with the disease", not sure what he meant by that. i guess it's ongoing unless he tells me to forget it on the 11th.

i guess my logic is, i don't want to "not" try something, and say years from now "i should have". but it is getting old. almost like we're gunea pigs.. know what i mean?

[sandal41]

oh and the procrit, i'm on that this time, because after the first week of treatment my count went from 13 to 8. that's keeping pretty much at around 10

[GoingAgain]

I'm really sorry, but I am really suprised that they let you go on that long. It's OK.
I went a full 18months, only to relapse.
You'll not be able to clear like this. I am so truly sorry. After my last go of it - 18 months, only to relapse, I know how you are/going to feel.
Sice the 18mo was my third try, and I had been through h*ll, the relapse news was just an "oh well" moment. I mean after everything else, it really didn't matter anymore.
All we have is now. Today.
I