Question regarding 48 weeks & PCR

[charm27]

As you know I started with VL of 75million. My 4 week PCR came backk 330iu. My hepatologist will only give me another PCR at 12 weeks and then again at 24. I would get one but am not working and its NOT feesible for me at this time financially. So being Im 1a and at 4 week am at 330, IF I CLEAR at 12 weeks would it be safe to assume 48 weeks would be enough treatment not knowing what week I cleared. Life would be so much easier if doctors agreed with you.
Any advice please.
Thank you.
P.S.: or would you go a step futher and ask to be treated for 56 weeks? providing I clear @ 12 weeks.
Charm27

[mikesimon]

If you went from 75 million IU/ml to 330 IU/ml in 4 weeks I would speculate that you would be undetectable at week 5 or 6 at the latest. That was a high starting VL and a steep decline so I would think that you'll have a good shot at SVR with 48 weeks of treatment. But, it's all speculation because, though we have statistics, we can never be sure about any of this stuff when it gets down to us individually And then there is your liver architecture to consider as well as other factors like whether you are insulin resistant or diabetic to more accurately assess the likelihood of SVR. But, so far I think things are looking good and I wish you the best. Mike

[jmjm530]

I believe -- better check -- that there's one study floating around (Newer Berg maybe?)  that suggests better results at  72 weeks if not UND at week 4, but not sure how well this has been received by liver specialists in terms of translation into treatment decisions. (The older Berg study suggested extend to 72 if still detectible at week 12, but two log drop and UND at week 24).

The other factor would be if you had significant liver damage -- that also might argue to extend -- but you're a stage 2, so you don't.

My doc would also probably want to extend if you were over 50 years old, but I haven't seen much support on his thesis given an RVR.

Which brings up your 4 week test, almost an RVR, but not quite if we define RVR as UND at week 4. (Some studies might define RVR as two-log drop by week 4, so you'd have to match up with studies).

All this leads at least me to think that the answer to your question would be a lot easier if you tested viral load weekly from here on out.

For example, if you were UND by week 6 -- as I was -- it might argue for only 48 weeks, as was suggested to me by the majority of liver specialists I consulted with.  

Given what you say re finances, isn't there any way you can twist your doc's arm? Isn't he the one who told you that the study doesn't matter, only your treatment?
Maybe time for him put the needle for the blood draws where his mouth is :) I'm assuming you have already dropped your riba back to 1200 mg/day?

The other thing reason for weekly draws here on out is assuming you took your doctor's advice and dropped your ribavirin down from 1400 to 1200/day --- weekly draws would be a safety net in case your viral load started to go up. In that scenario, you might catch it early -- add back the riba -- and still become UND by week 12. What if your reduced riba dosage isn't enough to wipe the virus out? Now, you won't know until week 12 -- too late.

Wish I had a clearer answer, but length of treatment isn't always obvious, even when you can pinpoint the exact week of UND, and less obvious when you can't.

Anyway, still keep that smile re the "330" -- just wish you could have a more precise idea when you will be UND.

-- Jim

[mikesimon]

Everyone would have easier decisions if they tested weekly. She didn't have a 2 log drop at week 4 Jim. She had greater than a 5 log drop at week 4. You've seen the slopes of VL decline and, though every single case involves speculation ,don't you  feel relatively certain that she'll be undetectable by week 6, at the latest?  Assuming she will be then what would you advise? Mike

[TeeVee36]

I wish my doc tested me sooner, now i am a little concerned.  They told me that they would test at 12 weeks to see if there was a drop in VL.  IF there wasn't she said we wouldn't be able to continue txing if there wasn't a drop by the 12th wk.  I got my PCR done around wk 10 because i was going to run out of my Interferon and they didn't want that to happen.  BUT, the only way they could get it prescribed was to be able to justify that the TX was working due to the VL drop.  Turns out my 10 wk PCR was UND as well as my 22 wk.  Now I am wishing that they tested me at 4 wks...

I will be done in June (48 wks total) and can see the light at the end of the tunnel.  I expect it to go fast.  I am concerned about brain fog though.  My doc indicated that it sets in usually towards the end of TX which is where i am headed.  I have read a horror story where someone couldn't even function anymore because of it.  They referred to it as 'chemo brain'.

[jmjm530]

NYGirl had similar viral load at week 4 as  Charm has, yet was detectible at week 12, and ended up treating 72 weeks. Her VL decline slope did not fit the mold. Had she tested weekly, who knows if intervention with higher riba would have brought her UND by 12.

In addition -- unlike NYGirl -- Charm reduced her ribavirin from 1400 to 1200/day at the week 4 mark which might end up affecting that decline as opposed to defying the predicted slope as in NY's case.

Yes, every single case involves speculation, but I wouldn't use the words "relatively certain" that she will be UND by week 6. I'd say, "probably" and "hopefully", given the aforementioned, but I personally wouldn't want to bank my treatment on it on "relatively certain" or "hopefully". Not unless I didn't have a choice which is sometimes the reality.

But assuming UND at week 6 per your hypothetical, I already suggested that if UND by week 6, given that she has not significant liver damage, that 48 weeks sounds right. However, if UND at let's say week 11 or 12, then she would probably have to take a hard look at the newer Berg? study that (I believe) suggests better odds with 72 weeks if detecible at week 4.

The other thing to keep in mind is that a big deal seems to be made of the five log decline, yet at least one study suggests that those with very high viral loads (like Charm) have the same chance of SVR as those with high viral loads (for example 1.5 million IU/ml). To me at least, this suggests that the important thing is not how many logs one drops, but how fast one reaches UND, or in the case of EVR, how fast one reaches a two-log drop.

Anyway, not sure if I wished you a Happy New Year yet -- so may this be a happy and healthy one for you.

-- Jim

[nygirl7]

But assuming UND at week 6 per your hypothetical, I already suggested that if UND by week 6, given that she has not significant liver damage, that 48 weeks sounds right. However, if UND at let's say week 11 or 12, then she would probably have to take a hard look at the newer Berg? study that (I believe) suggests better odds with 72 weeks if detecible at week 4.


If it were me that would probably be the course of treatment that I would shoot for.  

Charm, if you can at least get a PCR every two weeks that would be a huge help to you. I wish I had had some between 12 and 24 but honestly I didn't think I was going to ever go UND by that point and pretty much thought I was going to fail so it didn't matter. I talked myself into that stupid logic. Then...all of a sudden I WAS UND and it mattered to me a LOT.  But - in my case, I would have done the 72 weeks no matter what (although I originally had wanted 60 weeks both Jacobson and my regular GI said there is no sense to treat for just those few extra weeks) rather do the extra 24.

[mikesimon]

I think you did wish me a Happy New Year and I did you. But again, Happy New Year Jim and of course, a very healthy one too.
Mike

[goldenrule]

first off, congrats on your 6 log drop!!! that is sooo great!!! I think that you need to fight, kick and scream for another PCR before 12 weeks!!!! NYgirl's scenerio would convince me to do so.....

[charm27]

Thans for all comments! Life would be much easier if I could have my PCR when I want to.
Ive spoke rationally to 2 of my hepatologists, called them more than twice, called back again pleading for PCR, sent e-mails etc. They said to wait till 12 weeks.
(Only 4 week, 12week & 24 are done)

Thank god I was able to have the 4 week.

[jmjm530]

Of course don't drive yourself crazy over this, because the feedback you got is unfortunately pretty common re the tests. If so motivated, what you might want to do is call your PCP and ask them for the tests.

[charm27]

naaa....was just frustrated to some degree, and I am aware its common so what the heck.'
Im just going to keep on going with what I have and pray for the best.( I certainly am grateful so far and dont want to complain) I am glad to be a responder!
Thanks Jim.


Charm