12 week labs

[wyntre9]

I posted this on the other side but I know everyone doesn't check both forums so I'm posting it here, too.

Here are my 3 month labs.

They're not great but I guess I'm still in the game.

Genotype 1A, stage 1 Grade 1

Started TX 12/23/06

Beginning VL 1,140,000
Beginning Log 6.057

3/19 Labs
VL 4,480
LOG 3.651

Total Log Drop after shot 11 is 2.406

So I guess I keep going to UND and then tag on 36 weeks?

The good news (I think) is that my ALT is down to 21 from a start of 47 and the AST is down to 25 from 40.

Here are the problematic levels

WBC 2.3  ALERT
RBC 3.57  LOW
Hematocrit 33.9 LOW
RDW 16.5  HIGH
Platelets 117  LOW
Neutrophile 38  LOW
Lymphs 51  HIGH
ANC 0.9  ALERT

I'm on Neupogen 480 2x per month
Peg 180
Riba 1000

Thanks to everyone for your help and support through the past few months.  I wouldn't have even gotten this far without Forum.

As always, feedback, suggestions, comments, interpretations, opinions are greatly appreciated.

I'm going to post this on Community as well

Wyntre

[jmjm530]

You have several choices. As you suggest, you could ask for viral load tests either weekly or every other week and then tag on 36 weeks. Alternatively, you could follow the 72-week studies that suggest those detectible at week 12 but non-detectible at week 24 should treat 72 weeks. And lastly, as a stage 1, you could recognize diminishing odds combined with extended treatment and cut you losses, and stop to fight another day with hopefully better drugs, shorter treatments and better odds. All three are reasonable choices depending on how you weigh the relative risks and rewards. Personally, I don't think anyone with minium liver damage should expose themself to 72 weeks, but then again, I wouldn't treat to start with if I was a stage 1. Good luck whichever way you end up going. You did make your two-log drop but newer studies suggest that undetectible is what you want. When you do re-test, make sure you use a very sensitive test like Heptimax from Quest that goes down to 5 IU/ml.

-- Jim

[dperry10]

Good for you, at least you did get more than the 2 log drop, but after reading Jmjm post, I am confused I guess.  I know that we need to have that to at least continue treatment.  But I guess the difference with me is having grade 2, stage 2.. Or am I incorrect in thinking that ?  anyway, hopefully I get mine back next week, and will know which way I am going.    I wish you the best in what you decide to do.. either way..

[wyntre9]

which post?

And I'm gonna keep going.  Watching the dietrich video was enlightening and now that I've started, and i've got the disability in place (I'm dealing with health insurance and transfering to COBRA now) well, I might as well continue until/unless there's a CLEAR reason to stop.

But there's absolutely NO way i could do this TX and work.

Keep me posted about your labs and thanks for the doggie advice.  I amy be asking for more very soon.  :(

[wyntre9]

I don't seem to have any choice in the test that's ordered.

It's a Labcorp test and it says:

HCV RNA, PCR,Q1 (Quant Rflx)
Hepatitis C RNA-PCR Positive abnormal HCV RNA detected.

And then it says:

This test measures HCV RNA in IU per ml using real-time Polymerase Chain Reaction (RT-PCR) technology.

It quantitates HCV RNA from 10 to 100,000,000 IU/ml.

So, does that mean it's only sensitive to 10 and not 5 as you suggest?

(I know it sounds dumb but this < > stuff drives me nuts as I'm used to reading them as MUSICAL symbols and < means to grow LOUDER (crescendo) while > means to diminish as in DECRESCENDO.

And the meanings are opposite in lab reports (and everything else).

Thanks for clarifying the choices.

DP,

Yeah, I'm gonna hang in there for now.

[jmjm530]

That test is fine, and certainly makes no difference now because you were detectible over 10 IU/ml. However, if you're going with LabCorp, they have both a qualitative and quantitative that go as low as 2 IU/ml. I'd request one of those next time, probably the quantitative since you still have virus. The name of that test is "Hepatitis C Virus (HCV), NGI QuantaSure�, Quantitative, PCR"
http://www.labcorp.com/datasets/labcorp/html/chapter/mono/id004600.htm
Altenatively, you could get a Heptimax from Quest that goes down to 5 IU/ml.

-- Jim

[zazza]

I think Drusano's add-36-weeks-from-UND model is more or less a mathematical model not based on real studies. From what I have read there needs to be an extension from UND calculated in a more exponential way, that is if you get UND later than week 12 you need not only 36 weeks extension from that time, you need more since you respond slower.

After reading in the Berg study about the benefit of extended treatment especially for those below 6000 IU/ml at 12 weeks and UND by week 24, I have decided to push for 72 weeks if possible. This cuts the relapse rate from 57% for 48 weeks to 32% for 72 weeks for this subset of patients.

Wyntre, I know how you feel, once one starts fighting this virus and sees progress,  one wants to keep going as long as there is reasonable hope. Hope you get UND soon, and try to get tested every two weeks, it does feel good to know when you are UND.

[wyntre9]

Thanks for the clarification, Jim.

But I guess my Dr. would have to specify on his standing order with labcorp to change the test.

We're getting along so well (my Dr. and I).  I don't wanna spoil it.  *LOL*

At least NOT until I'm UND.

Zazaa,

Thanks very much for the info.  It's really helpful to know about these studies, and 37% relapse vs. 58% is a HUGE deal!

You're right, about wanting to go on since I've started already.  I've posted elsewhere that I really don't see myself going through this again.  

So I guess I better take my shot now.

What week are you on?

[zazza]

I am on week 20, so the good thing about it if you decide to go for 72 weeks (and even if you don't) is that we are traveling companions. Always nice to have someone there going the distance with you.

Now, I am a little uncertain about your test dates. Is the below correct?
Your start of treatment: Dec. 23, 2006
Last day in week 12: March 16, 2007
So exactly what date did you get your 12-week test? (And it says something about 11th shot - did you not get your test the day before your 13th shot?)

I was detectable at week 12, but the viral load was so low it was impossible to quantify with the test with a sensitivity of 15 IU/ml, which is the only one they use here in my country in Scandinavia. At week 15 (the next test) I was UND.

Did you get any prior tests? I have now been told that already my week 4 response with a less than 2 log decrease (1.6 log actually) showed that I was probably a slow responder.

The good news is: We are responding! If you get UND by week 24 you will be a slow responder. If not, even though you will have to quit treating with a detectable viral load at week 24, you are still a partial responder. Both of these are good signs that interferon works in your body, and that if you need to treat again you can probably beat this virus with a more intense regime.

Also, I am thinking of what I saw in an article of Berg. I interpreted his chart where he suggested a future consensus for individualizising treatment as it being good to upper your Ribavirin dosage if you are still detectable at week 12, so as to ensure getting UND by week 24. This might be something you want to discuss with your doctor.

Hang in there, Wyntre! We are going to beat this virus yet!

[wyntre9]

"Hang in there, Wyntre! We are going to beat this virus yet!

Now, I am a little uncertain about your test dates. Is the below correct?"

Hahahaha.  You're not alone!  Confusion is my middle name and it seems to drive some people NUTS!!!  I try - really hard - and I always get CLOSE to the final answer or at least I'm in the ball park.

I DID my 12th shot on March 9th but I do the bloodwork in the morning and the shot at night so the results I quoted are after shot 11.  

I DID have another bloodtest the following week, on March 16, AFTER shot 12, but, for some reason, Those results aren't in yet.

Based on what a lot of folk said, I guess I should do them frequently to monitor exactly when UND happens.  (And, yes - I KNOW i'm gonna get there!)

"Did you get any prior tests?"

Yeah - I was going every week.  My Vl started at 1,140,000
Then it went to;
93,000
72,000
37,000
17,000
Back up to 37,000
3860
and last one was 4800 or thereabouts.

"I have now been told that already my week 4 response with a less than 2 log decrease (1.6 log actually) showed that I was probably a slow responder."

Yeah, that's what I've read, too.  My Doctor doesn't like to LABEL his patients which I can understand.  He says everyone's different.  But I was relieved that I got at least the 2 log drop.  if I hadn't, I would be seriously considering stopping.

"The good news is: We are responding! If you get UND by week 24 you will be a slow responder. If not, even though you will have to quit treating with a detectable viral load at week 24, you are still a partial responder. Both of these are good signs that interferon works in your body, and that if you need to treat again you can probably beat this virus with a more intense regime."

THANK YOU!!!! I NEEDED to hear that!  

"Also, I am thinking of what I saw in an article of Berg. I interpreted his chart where he suggested a future consensus for individualizising treatment as it being good to upper your Ribavirin dosage if you are still detectable at week 12, so as to ensure getting UND by week 24. This might be something you want to discuss with your doctor."

GREAT INFO.

"I am on week 20, so the good thing about it if you decide to go for 72 weeks (and even if you don't) is that we are traveling companions. Always nice to have someone there going the distance with you."

Ya know, it sometimes feels a little lonely being a 1A around here so it's great to be in-synch with a kindred genotype.  :)

wyntre

[wyntre9]

just to clarify I understood -

You said that according to the Berg study the rate of relapse for 1A's drops from 57% at 48 week TX to 32% at 72 week, right?

And that's VERY encouraging!

[zazza]

Despite your middlename "Confusion", I am starting to understand your numbers. (Smile.) So you have yet to receive your actual week 12 lab results (the ones taken on Friday March 16). Be sure to post these when you get them!

I am still confused why you had a temporary rise in viral load. Did you take all doses of both interferon and ribavirin? No missed dose? No interruption? Has your doctor had any explanation to this?

May I ask you to post not only the viral loads but also what date the test was taken? At Clinical Care Options site there is a HCV RNA Monitoring Tool, a diagram where you can fill in your own numbers to see the decrease in viral load and follow your progress. It would be interesting to do so with your numbers.

The study by Berg  is called "Extended Treatment Duration for Hepatitis C Virus Type 1: Comparing 48 Versus 72 Weeks of PegInterferon-Alfa-2a Plus Ribavirin". Friole sent me a copy of it by email. As you can see by the title it is all about genotype 1. Patients with a viral load at week 12 of less than 6000 IU/ml but more than or equal to 50 IU/ml had a relapse rate of 57% with 48 week treatment, but only 32% with 72 week treatment. I guess further studies are needed to verify these numbers, but it seems to me that more and more medical experts are considering/recommending extended treatment for slow responders.

We are at war with the virus during tx. Us slow responders might not have the best circumstances under which to fight this battle, but these circumstances are our reality if we choose to continue to fight at this time of our life. I think we need to be as informed as possible to make the decision that is right for us when we come to a crossroad in our treatment. These crossroads are mentally exhausting, but it feels good afterwards when you have reached your own decision. For sure, it is not easy being a genotype 1!

[zazza]

I just noticed even your week 11 viral load is an increase from the one before:
3860
4480 (March 9th)
(Hope I got the numbers right.)

As I understand it, after the initial rapid decrease at the very start of treatment, there should be a steady unbroken decline of viral load until UND is reached. I must ask again, no missed doses? If not, my very amateur guess is you need a higher dose of ribavirin. Something seems odd to me here. JIM! Can you explain this to us? (Is this viral breakthrough?)

[wyntre9]

OH Noooooo!!!!

You don't REALLy want me to post EVERY VL, do you?  I swear that yesterday, as i was trying to organize all the darn reports into some sort of order, I almost threw em all out!

But, I haven't received the results following March 16, after shot 12 labs.

I've called Labcorp and they said they sent me a copy but I got reports in the mail today and that one's not included.

When I saw the Doctor, on March 21, he didn't seemed too concerned about it.  (But, then he doesn't ever seem too concerned about anything which is probably GREAT for me as I tend to extrapolate - could ya tell?)

Anyway, I've had increases in VL twice as far as I can tell.

Once I went from 13,000 one week back up to 37,000 the next week.  i was very upset and asked the Dr. about it but he said not to worry.  (I believe that was around week 7 or 8)

Also, when we discussed my current results (shot 11), there had once again been a spike from the previous week of 3800 up to 4600 or thereabouts.

I questioned him about it but he showed me the graph and said, look, your numbers are going down, you made more than a 2 log drop, VL fluctuates on a daily basis, and once again he said TX is working and I shouldn't worry. The difference between 3800 and 4600 was, he said, relatively insignificant.


I posted on the other side after getting the 3800 number and i was so excited coz I though it was almost a 4 log drop but someoine quickly corrected me and said it was closer to 3.

now it looks like it's 2.4  Oh well.

I'm trying to understand this stuff.  After watching the Dr. Dietrich video that My Own posted the link to a couple of days ago I'm more relaxed about my progress.

I will post all the dates and VL's later but I don't wanna drive anyone else crazy with this stuff!

However, you and I are slow responders so of course we're concerned!  And I REALLY appreciate the chance to discuss it!

[zazza]

Hope I am not messing you up with all my questions! Thank you for sorting me out on the viral load fluctuation. That was good to hear! (Also checked myself that viral breakthrough is only something you can get once UND. Thank God I did not mess you up with my thoughts on this one! I will blame it on the mind fog setting in.)

And about the old viral loads, how about explaining which one is week 4? Is this a good compromise? I just want to get a picture of at what rate your viral load is declining. I am so excited (although of course it is unfortunate for you) to have found a fellow traveler, I just want to make sure you are going to be UND by week 24.

[wyntre9]

Don't say I DIN'T warn you!  :)

It looks like there have been 2 spikes so far.

And I know there's something strange about a couple of the dates.

Here's the whole enchillada!

Before TX
11/14/06 1,140,000
Log 6.057

1/16/07
VL 93,200
Log 4.969
Log Drop 1.088
Vl drop 1,046,800


1/22/07
VL 72,300
Log 4.859
Log Drop 1.198
VL drop 21,100


2/9/07
Vl 37,500
Log 4.574
Drop 1.483 from beginning
VL increase 20,200
Log increase .337

I Know there�s something weird about these dates but Labcorps reports are VERY difficult to decipher �
there�s a sample collection date,
A Date entered
And a date reported

2/11/07
VL 17,300
Log 4.237
Log Drop 1.82
VL drop 55,000



AROUND THIS TIME I CHANGED LAB TESTS FROM MONDAYS TO FRIDAYS WHICH IS THE DAY I DO INJECTION


2/16
VL 20,700
LOG 4.316


2/23
VL 13,500
LOG 4.130


3/02/07
VL 3820
LOG  Doesn�t say Log but someone on forum said it was about 2.55

3/09/07
VL 4,480
LOG 3.651

3/16

Didn�t get those results

3/23

Didn�t do labs that week

[zazza]

Thank you! I will take a good look at them!

[wyntre9]

It's probably a good thing to try and organize this darn paperwork.

My 4 week VL was either 93,200 or 72,300, down from starting VL 1,140,000.

As far as I can tell, it was about a 1.1 Log drop.

So, now tell me yours!  (or is it posted above?  Brain Fog is a universal SX!)

[zazza]

Now you got me laughing! Yes, let's see how organized I am! Fortunately I only have 4 viral loads to remember, because the darn nurse promises me lab copies but never gives them to me. And the lab here is not allowed to give them directly to patients (how stupid is that).

Pre-tx viral load, August 23: 120,000 IU/ml (LOG 5.079)

Start of treatment: November 8 (I take my shots on Wednesdays, around noon, I prefer to have them done and not wait until night. Test day is on Tuesdays or Wednesdays before the shot.)

week 4 VL, December 5, 2900 (LOG 3.462)
Log drop: 1.617
VL drop: 117,100

week 12, January 31, "repeatable borderline value" which means detectable but too low to quantify with the test's sensitivity of 15 IU/ml.
(Let's call it a "14", LOG 1.146, in which case the log drop since week 4 would be 2.316, total log drop since beginning 3.933.)

week 15, February 21, UND!

Thank God I have a good friend working as a counselor who managed to get a copy of that "borderline report" of week 12, because I had a very difficult time understanding that "borderline" value. Finally I called a doctor at a laboratory who managed to explain it to me.

The last weeks, since week 17, have been easier for me when it comes to sx, seems like my body has adjusted. Today I was even digging in my garden AND doing laundry! I have hardly left my house all winter except to buy food when it has been dark out, not feeling up to meeting anyone, so you can see things are changing for the better.

* * *

Looks to me as you need to drop from LOG 3.651 (as of week 11) to LOG 1 (which equals 10 IU/ml, the sensitivity of your test) in 13 weeks. This would mean a 2.65 drop minimum.

[wyntre9]

Sounds like you're making excellent progress!  (much better than mine)

Congratulations on digging in your garden today.  And laundry, too!  Now THAT'S ambitious.

I read somewhere that the lower the initial VL the easier or closer one is to UND.

So you got UND at week 15.  Well, I know I'm not anywhere close to that, yet.

But I'll keep you posted.  I'm not gonna do labs again until April 5 or 6, after shot 15.  I felt very strongly that it was important to keep track to make sure I hit the 12 week minimum mark.

When I saw my Dr. last Wednesday and I told Him how lousy and weak I'd been feeling, he said, in his usual matter-of-fact way, "Well, if you stopped getting your blood drawn every week you might feel better!"

*LOL*  He's right!  I guess those 5 vials or so per week can really add up.

In a way, I'm glad, coz this paperwork has been driving me nuts.

[nygirl7]

The latest studies say if you are NOT UND by week 12 but ARE UND by week 24 - do 72 weeks.  It gives you about a 20% better rate of NOT relapsing (which normally; is about 48%)

If you read the BERG study you will see how the data breaks out.

Don't ever take anyones word on these things - learn about them for yourself. Then...you get the full picture.

It's important to do and stand by what YOU believe in.  If you don't believe in what you are doing...it will make it so HARD to do it.  I personally read the Berg and Sanchez Tapias studies and applied them to MY personal situation and did the72 weeks.  I have NO doubt that this worked for ME and although it was a pain in the neck it DID give me better odds and I knew it so it made it tolerable.

Good luck.
(Remember the whole Halt C idea is older info than the newer studies)

[nygirl7]

PS I got this directly FROM Dr. J who was lead investigator on BOTH studies (so I figure he knew more than I did, right?)

[wyntre9]

Thanks for the comments.  At this point, that's what i'm gonna do - keep treating and see what happens at the 24 week mark.

I hope you didn't think I was in any way dismissing any studies?  How can i dismiss something i don't know anything about?  :)  

I am a little frustrated and slightly discouraged that my VL drop hasn't been bigger and that I'm not an early or rapid responder but the 2.4 log drop is more than minimum and my Dr. seems encouraged so I'm not quittin now!
(Just WISH I'd been UND!  Can't blame me for that, right?)

Thanks again nyg.  I know you did the 72 weeks and i know that's also what I'm potentially facing.

It's soooooo helpful for me to post here and get feedback and I know some people might not want to respond when the progress isn't better.  I've felt a lttle left out of the loop with my 12 week labs.  But I was just being too sensitive.

thank God zazaa found me and struck up a dialogue coz I guess I really needed to talk.

How ARE YOU?????

Did ya do (what is it 8 week test? yet?

[Htownwife]

I'm glad you're still hanging in there. I think you're doing the right thing by waiting to see what happens after 24 weeks.

And you've got a great point that this IS the time...you've got everything worked out work wise and insurance wise, and it may be very difficult to schedule this into your life again!

Not to mention you've already invested 12 weeks into it!
Yes, it's disappointing that you weren't UND at 12 weeks.
My hubby wasn't either; his test was sensitive to 30, and his count was 33.
But he had had a 4.36 log drop by then.
The dr tested him again at 16 weeks and he was UND by then, and has remained UND since then.

He doesn't want to continue further, and I'm letting him decide what to do on this one! After all, it's not me going through this treatment!! I have told him that studies show he should continue to 72, but it's a hard sell.

I just pray he stays UND after he stops.  

Hang in there, Wyn!!

[wyntre9]

I didn't realize your husband was a candidate for the 72 week TX.

That's a tough one.

I can only imagine he must be desperate to stop the meds.

I hope you'll post his stats on the other side so you can get some more advice.

Let us know.  

(BTW, if he's doing 72, you're doing 72.  I'm gonna say it again, he's one lucky dog to have you.  I hope he appreciates it!)

[Htownwife]

Thanks, Wyn!
Yeah, he appreciates it! And furthering treatment is going to be a point he discusses with his doctor. I don't know what his (the dr's) take on this will be. The doctor thinks he's made great progress, but we all know what the odds are when not clearing at week 12.

And yet, he was so close, and there's also a risk when exposing yourself to such a lengthy treatment.

So...like I said, I'm going to let HIM decide on this one. I really don't know what I'd do if I was in his shoes. These are really tough decisions!!

[wyntre9]

I know you probably posted this but I can't find it.

What was his degree of damage and what was his starting VL?

And he's 1A, right?

[Htownwife]

Here they are: Genotype 1B
screen 1  March 21,06  1,654,868
screen 2  May 26,06    758,312   (screen 2 baseline)
Started TX June 1, 06
week 2  June 16  2,572,231  (dr said meds had not kicked in yet)
week 4  July 7   92,184
week 12 Sep 5   33   (log drop from baseline 4.36)
week 16 Oct 6   UND<29
week 24 Nov 17  UND<29
These are the only labs I have copies of. He had a dr. visit yesterday and I need to call to get a copy.

Sooooooooo, you can see not an easy decision.

Right now he's energized, optimistic, and feeling great! I'm really surprised because I was fully prepared for the last weeks to be as hard as the entire treatment. He's still having SX, but not anything near what he had been having. December and January were the worst, with nausea, no appetite, extreme fatigue, and anything else you can think of. He lost a total of 50 lbs on this treatment, and probably could have stood to lose 20 at the beginning. He was frightenly thin, and couldn't eat.
But he's already gained 20 back, and is also getting his appetite back.

We need to have a discussion with his doctor and get his opinion on this. We don't want to have him continue exposure to these drugs if not completely necessary.  

[wyntre9]

The UND by week 12 and ever since sounds real good to me, especially as I didn't achieve that.

I know i would feel very encouraged by the results.  
I'm sure you've been reading the studies and reading the posts and I think it was Zazaa who said that according to the Berg study relapse rates decline from 57% to 32% for 1A/s on 72 week vs. 48 week TX.  And that was for patients who are not UND at 12 weeks but have less than 6000VL.

Anyway, I'm not going to comment much coz i don't want to give any wrong info and so many others are so much better qualified to give advice.

But i wish you guys the best of luck whatever your decision.

Keep us posted.

Wyntre

PS - about the future and teaching - well, I'm preparing myself and the flock for poverty.

At this point, that's preferable to even the thought of ever going back.  Weird how it took this diagnosis for me to realize that.