Just came back from hospital: test results

[Bovary73]

I just came back after seeing the nurse at hospital and got my 4 weeks blood testresults.
I started with a 4 weeks lead in on Riba + Interferon and added Victrelis last friday (one week ago).
My test results show that I' still positive. I was so sad when I got these news, because I was so sure and so intensely trying to think positive, that my only option was to be UND at week 4. As my viral load was so low (100 000) when I started treatment, I was so "sure" that this was going to be easy. I was so sad and so shocked today because of this...

Could you help me understand my results at 4 weeks?

B-Leukocytte: 3.0 (8.3)
B-Hemoglobin: 9.3 (12.7)
B-Glykosyle Hb: 3.7 % (4.7%)
S-Bilirubin: 39 umol/l (17 umol/l)
S-ASAT: 24 (17)
S-ALAT: 43 (30)
S-ALP: 54 (52)

In parentese the results before tx.

They did not take any viral load test at week 4, only if I'm positive or negative.

Based on this info; what can you say? I will take a new test at week 8 and if still positive I will have to treat 48 weeks instead of 28 weeks?
I have never taken any biopsy.

If positive on week 8, they will take a new test at week 12 to see the viral load, if it drops or not.

I see so many of you here being UND at week 4 and wish I would have the same...I'm so sad right now. Scared of not responding and scared of not being able to have a long and healthy life. I have two small children (3 and 6 years old) and all I want is to stay alive for them, watch them grow up....feeling very low right now..

[kmatucson]

Keep in mind that most of us that were UND at 4 weeks are taking Incivek, which is started on day one.  With Vic, the start date is 4 weeks after you have started the Int/Rib..  Keep a positive attitude and try not to worry.  I know it is hard, but stressing is not good for you.  

[suezeeque]

http://www.medhelp.org/user_photos/show/243382?personal_page_id=2288406

:)

[mikesimon]

Thanks Will.

Mike

[willbb]

Hi Mike  
3.7 % or   .037 X 100   (In canuckville)

Will

[mikesimon]

I've seen very low A1c's but nothing anywhere close to .037. Do they express the value differently in Canada? Like move the decimal point 2 to the left?
3.7 I can relate to even though it's very low but .037 looks just crazy to me.

Mike

[suezeeque]

Very, very true.  My last A1C was 0.037.  My endo about had a heart attack yesterday after he saw it.  Then looked at my RBCs and calmed down.

I believe his words were - "Is it even possible for you to still be alive?"

[mikesimon]

It might be good to also mention HbA1c in this context.
If you're diabetic and are treating with riba/Peg do not rely on your A1c. If you are suffering from anemia your A1c will be inaccurate - it will be lower than it would be if your red blood cells were living their expected lifespan - 120 days.
Therefore pay more attention to your glucometer readings because they will be more representative of your glucose blood level than your HbA1c.
Way back people used to celebrate their nice low HbA1c numbers until we finally figured out what was really going on.

Mike

[willbb]

Mike/Bovary:

Thanks Mike for pointing that out and ..Bovary sorry I misinterpreted that and yes as Mike has pointed out often times Bili levels can rise during tx. and has no bearing on fibrosis.
Again...it is not at all unusual to still have Det. virus during the 4 week -lead in with VIc...

It is the Vic that should do  the heavy lifting in the next few weeks to eradicate virus..so no reason at all to not be optimistic.

Best..Will

[mikesimon]

You said:  "The reason I ask is I see your Bili. pre-tx was at 39   and the normal reference range is <23  and this is one marker that can be looked at to gauge amount of damage(fibrosis)."

If I understand Bovary correctly her bilirubin BEFORE treatment was 17.
Now it is 39.

Her bilirubin may not reflect anything about her liver. I believe that it might be the result of hemolytic anemia from ribavirin/Peg. The premature and increased destruction of red blood cells may have resulted in an increased indirect/unconjugated bilirubin and thus her Total Bilirubin is elevated.

I just think it's something that should be considered here.

Mike

[Bovary73]

me again: Will: my bilirubin was at 17 pre tx, now it's 39 (the numbers in parentheses are the pre tx).

Bovary

[Bovary73]

Hi,

thanks a lot for your answers. I don't know what I would do without this forum :)

Will; I have only taken blood tests throughout the years. No ultrasound and no biopsy. So as far as I know, my doctor don't know what stage I am (cirrhoses). But he keeps saying that seeing my blood tests indicates that my liver is still ok. I don't know what this is based on.

Most of the appointments till now have been with the nurse, not the doctor. But I can aks her about this next time I have an appointment (in 4 weeks).

So; high bilirubin is an indicator of cirrhosis?

I've been feeling ok, no major sides of the hep c through the years. Not that I'm aware of.

I'm so sad today...after the apointment I had, and all the uncertainty about treatment lenght, if I'm responding at all, etc. etc....and also if I may have severe damage to the liver or not...makes me scared and sad.

Thansk again for answering my questions and beeing here. I haven't got words for how much that means to me....to know that we are not alone - with this scary, dragon desease.

[willbb]

As you can see from the dosing link above,the protocol  if UND at week 8 and still at week 24 for tx. naives is to treat for 28 weeks total ,however I see from your post and I remember from a previous post you asked about treating for 28 or 48 weeks.

The  viral load response will answer that .however it is recommended that all patients with cirrhosis treat with Vic for the full 48 weeks.

I See you did not have a biopsy ,however have  any tests been run to ascertain amount of liver damage you may have?

The reason I ask is I see your Bili. pre-tx was at 39   and the normal reference range is <23  and this is one marker that can be looked at to gauge amount of damage(fibrosis).

This level does not necessarily mean that you have advanced fibrosis,however seeing as the treatment regime should be 48 weeks if that is the case ..hopfully your doctor is aware of this and knows what stage you are.

Best..
Will

[working dog]

like will says...a weekly blood test...cbc....every week....this will help you get through tx ...you should stay in touch here and ask questions...that will help too...i was on incivek and you start that right out of the gate..both pls work well but vic is stared later ....good luck...billy

[willbb]

Hi there... First of all those blood markers above look fine for someone on treatent ,however the HGB at 9.3 would be considered midly anemic(which is fairly normal for someone on therapy) This should be watched closely (a weekly blood test) to keep on eye on any further drop as the protocol for tolerability of anemia is to slightly dose reduce the Riba or possibly start the rescue drug procrit(as some doctors initiate)

Doing Vic therapy, the first crucial test to see  how you are responding is at week 8. However he should do the viral load PCR,rather than just the pos. or.neg.  test to  guage how you are resonding,making sure there has been no viral breakthrough(rise in VL).
I have linked the dosing protocols below if you are interested in having a look.

Don"t feel too bad about not being UND at just week 4..remember that is just a lead-in with Inf. and Riba. to gauge response ,however the doctor only running the pos.or neg. test .doesn"t really  give you much indication of the 4 week result.
Again... make sure you discuss with him doing a viral load count  at week 8 and 12  and not just the pos. neg. test.

Good luck

Will

http://reference.medscape.com/drug/victrelis-boceprevir-999655


Treatment duration
Duration of treatment depends on HCV-RNA levels at treatment weeks 8, 12, and 24

HCV-RNA levels at 8 weeks

Previously untreated and HCV-RNA levels undetectable: Complete 3-medication regimen at week 28
Previously untreated and HCV-RNA levels detectable: Continue 3 medication regimen through week 36, then continue peginterferon alfa and ribavirin through week 48
Partial responders or relapsed and HCV-RNA levels undetectable: Complete 3-medication regimen at week 36
Partial responders or relapsed and HCV-RNA levels detectable: Continue 3 medication regimen through week 36, then continue peginterferon alfa and ribavirin through week 48
HCV-RNA levels at 12 weeks

Response-guided therapy was not studied in individuals who had less than a 2-log10 HCV-RNA decline by treatment week 12 during prior therapy with peginterferon alfa and ribavirin
If considered for treatment, these patients should receive peginterferon alfa and ribavirin x4 weeks followed by boceprevir x44 weeks in combination with peginterferon alfa and ribavirin
In addition, consideration should be given to treating previously untreated patients who are poorly interferon responsive (as determined at TW 4) with 4 weeks peginterferon alfa and ribavirin followed by boceprevir x44 weeks in combination with peginterferon alfa and ribavirin in order to maximize rates of a sustained virologic response
HCV-RNA levels at 24 weeks

If HCV-RNA levels are undetectable at treatment week 24, continue with treatment regiment identified at week 8

[Bovary73]

No, they said that they don't do any Viral load untill week 12. For week 4 and 8 they only check if I'm UND or not (PCR positive or negative). I was not UND / PCR positive.

[suezeeque]

I don't understand what you mean when you say that they didn't do a VL but only if you're "positive or negative".  For antibodies?  You'll always be positive for antibodies.

You should call them and clarify this.