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Post Info TOPIC: "not a walk in the park"


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RE: "not a walk in the park"
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Oh, and my viral load a week before I got jaundiced was 7 million, but then 3 weeks later after I got acutely sick and jaundiced, it went to just 546 little suckers! The acute attack was my final big push against erradicating the virus and kicked it from high to practically non existant in just 2 weeks. I would just make sure you get a viral count a week or two after this jaundiced episode clears, to see if that was the final countdown smile.gif Remember, you do have the right to tell your doctors you want to wait a few more weeks to see if you are clearing it with this acute episode. Good luck!!!

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Mano, my physician told me that the log drop formula is really only used to watch your viral trend ON TREATMENT, because they use it to see if you are responding and whether or not treatment should be continued. He told me that the log drop formula is not really applicable to spontaneous clerance because a person's viral load during spontaneous clerance is higly dependant on the immune response at that very moment in time. For example...someone could be spontaneously clearing and we may not know it one day but the next day their immune system kicks major ass and the viral load is brought to almost nothing. But if you were watching your trend before the big immune response, then the drop would not be very impressive, thus not indicating clearance. I dunno...just food for thought and I know that every doctor is different, just saying what mine said biggrin.

But it is WONDERFUL that you got jaundiced!!!!!!! An episode of jaundice in the acute phase highly improves your odds of spontaneous clerance! That is basically a sign that your immune system is killing the **** out of your liver cells in an efort to kill the virus; basically your immune system has figured out how to get rid of the virus and is actively doing so, resulting in significant, but temporary damage to the liver.

Keep the faith becaue you obviously have a very good immune systemif you have been able to keep the HIV virus at bay, so I bet it can figure out this HCV thing too. Don't want to create false hope, but just trying to give you somethng to keep your head up at. Best of luck with your next viral load count!



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1.400.000 expressed as a base 10 log is 6.3. The "6" indicates 10 to the sixth power, or 1 million. The ".3" is the 400K fraction in base 10.

The two values express the same viral count.

A VL of 140000 or 4.3 in base 10 would indicate a two-log drop.

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well thats what i thought as well but the number they had on the screen didnt say that.. im not exactly sure but there was the 1st number of Vl=1.400.000 nad then (log10=6.3) or something like that and the other one was VL+700.000 log10=5.8 (not exact nrs im giving it as an example) so she was like yeh you see its not even a  1log drop. i dont know maybe im getting confused it was all a bit too much information and didnt have time to copy the results she couldnt really print in there and it got complicated to ask for later.

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29 co-infectedVL (28Feb)=140.000 / genotype 4/ fibroscan 6.2 / acute phase infected less 6 months
started 24 weeks treatment 180mg pegasys + 1000 riba 11th March 2011. UND at week 3



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Hi Mano,

You were saying you weren't sure about how they work out the "log drop"

A “log drop” is a 10-fold change in viral load. (Take
one zero off the end of the starting number for each “log
drop”)

Example

Starting viral load 1,000,000
one-log drop 100,000
two-log drop 10,000

The link below explains more about viral load tests:

http://www.hcvadvocate.org/hepatitis/Basics/Viralload.pdf

Wishing you all the best with the tests smile

Love Steff xx





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Geno 3a. 24 wks tx 20/10/05 - 06/04/06. Achieved SVR.



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Sorry to read this news Mano.  Can only hope that the VL reduction continues as it has been.

Be kind to yourself and you have lots of support here. aww
Thinking of you.
Hugs
Heather
xxx


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Finished TX 2005. Geno 3. Achieved SVR - Heather.

When You Are Up To Your Neck In It - Keep Your Chin Up!!

'Knowledge. Is knowing that a tomato is a fruit. Wisdom is not using it in a fruit salad'. My dad. X.


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hey Sunny!..
cheers for your comment and help.. thing is i dunnow how to do the log thing.. the nurse says its going around the 5log10 up and down she thinks.. so didnt reduce enough even if it looks like 50 per cent to me.. i dunnow..
anyway they took another viral load last friday and now they set up a date for me to start treatment and that is on the 11 March and on that day they are doing yet ANOTHER viral load so theyre absolutely sure of the trend (if there is any trend)... he says that if the next 2 ones show a significant reduction they wouldnt go for treatment.
but chances are im starting on the 11th cause they dont believe im clearing it.
in the meantime my eyes went yellow. i dont look good.


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29 co-infectedVL (28Feb)=140.000 / genotype 4/ fibroscan 6.2 / acute phase infected less 6 months
started 24 weeks treatment 180mg pegasys + 1000 riba 11th March 2011. UND at week 3



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Hi Mano, sorry to hear you've had a cruddy week. I'm still a bit confused though...your viral load dropped from 1,300,000 to 700,000, so are you going to wait another month still to see if you are clearing it, or are you starting treatment now?

If your viral load is dropping and you seriously think you are within the first three to four months of infection, then you still have a bit of time to watch your viral load trend before jumping into treatment. My doc said that the differences in treatment suscess are not going to really vary if you started treatment on month 3 versus month 5. It's only when they compare people who started treatment in the first 6 months of infection versus people who have had the virus for years that they see the acute phase suscess differences.

Does your doctor want to test you in another month to see if your load has dropped even more? I dunno...but if you have dropped your viral load by half in just a month, I would see that as a positive sign of possible spontaneous clearance and perhaps you should wait another month. Just my 2 cents. Good luck with your decisions!

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Hi Mano,  Sorry that your news was less than expected.  It seemed for awhile that every time I walked in the Doctor's office that they had discovered a new problem that my body had.  Most of what they said was worse case scenario, so it worked out better than they described.  Don't focus on the negatives and keep your thoughts on a healthy you. 
    It's sounds like your partner will be a great support to you during treatment, which will be a huge help.  The two of you will survive this and have a long life in the future!  Take care, tysmile

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Genotype 2 - 24 week Tx - Start 10-8-2010 - 4 week PCR test UND, 12 week PCR test UND, 24 week PCR UND,  SVR Oct. 11 



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Hi there Mano, it`s never nice to be told worse news than you were expecting, but do try to focus on the positives, I know it`s easy to say that but it really does help. All the waiting around for different results is stressful, but try and take it one step at a time.  Before treatment the side- effects sound very scary, but actually it could go a lot smoother than you think. 

Having a good mate to talk it out with is such a bonus too.

All the best of luck, we are here for you.  Jill xx



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 



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Hey Mano,
I'm sorry too that the news wasn't what you hoped for. You know we're all here for you as Brendan said, and it sounds like you have a wonderful friend to help you out on the home front.

Remember that it's best to focus on the positive rather than the negitive. Like the tyroid issue is only 5%, so don't even go there. You have a 95% chance you won't have any probs with this and them are pretty good odds, don't you think? Also keep in mind the the new drugs are slated for approval in late May. Maybe there's a chance they could get incorporated into your treatment plan. Something to ask the doc about anyway.

With me the hardest part so far was what you're going through right now - the testing and waiting and not knowing prior to the actual treatment. It's stressful mentally for sure. Just hang tough and plan on going through a tx that will end successful.

Randy

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"Ah but I was so much older then, I'm younger than that now."  Bob Dylan

BJ


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Gidday Mano,

Sounds like a tough day down there at the hospital, but tx will never be a walk in the park, probably more a crawl in a swamp with a leaky snorkellaughing.gif but that's life, and no one gives up here mate, and the tougher it gets, the harder you fight.

Having any odds is more than what a lot of people have, let alone good odds like that, so you are gonna have to face up to days like you've described here, and know that unfortunately there wil prob'ly be more before you finish tx.

Sure 24 weeks would have been sweet, but it's all a matter of perspective really, because to me 48 weeks looks like a walk in the park backwards.  I know it's all relative and that your 48 weeks will be tough at different times, but you have chosen to fight the virus, and if you want to do that successfully you've gotta' grab all the positives that you have going for you, pull out your finger and get on with fighting this virus with all you've got.

We will all back you to the wall mate in your fight against the virus, and help you in any and every way we can, so lets get stuck into it and start to work on getting those numbers down.

Cheers,

Brendan.



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Geno 1b 72wk tx (Sept '09- Feb '11) Tx sucks, Sx's suck, but no one quits on my watch.   Pre-tx VL - 7.6 Million - Wk 4 - 480,000 - Wk 12 - 19,000....Wks 24, 36, 48 and 72 PCRs were all - negative :-))))Achieved SVR August 2011 



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I'm sorry you didn't get better news.  You can do it Mano !!  Try to remember you are young, you've got your whole life in front of you.  You will beat Hep C. 

Best wishes,

James

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Diagnosed 4/13/10; Started Tx 8/13/10; SVR 7/27/11


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...
feeeling a bit down to be honest. looks like everytime i go in they give me more and more bad news.
im particularly down because the specialist nurse told me chances of clearing it at 4 weeks were very small and the target is more realistically to clear at 12 weeks.
Dr. last time i saw him said that if i was to clear at 4 weeks i could even just do 24 weeks. today i was told am looking at 48 weeks standard, and he would only suggest stopping at week 24 if i couldnt really deal with sides at that point.
on top of that i was told i was gonna have Pegasys because its indicated for treatment in people with kidney failure and my creatinine has been up and down last few years so they say better play
plus i thought they knew i was infected pretty recently well its not that obvious anymore! apparently the test they ran on 28th nov 2010 for hep c was antibodies (and since i still dont have any ) no wonder it was negative!! sooo  last one they . tested for virus itself in APRIL!.. now they say my enzymes gone up in january and that usuallly means 3-4 weeks after infection... but who knows..

theres more:she told me i will probably get my bilurubin to go up its 59 now she says my eyes will probably get orange sometimes (not all the time, great news :((( )
it didnt really go well.. i mean she answered all my questions and shes definetly well informed but i guess im just starting to have to deal with the whole seriousness of the situation. Dr. came in as well and to make it worse said my chances are probably 70 per cent treating in the acute phase and would be 90 per cent if i wasnt hiv positive. and he thinks im ready.. and then if i wasnt to respond that there was still hope with new treatments coming up and that i was still young and they would do "their best" i think im back in shock.

they took loads of blood.. (also gonna check if my tyroid is ok for treatment) plus yeh she told me 5% will get problems with tyroid and they remain after treatment (that was the scariest also) and she warned me about skin problems, rashes, etc..
she said treatment is lightly to awake all my health problems till now.

after that i went to see my best mate. hes always really laid back and makes fun of everything.. today he broke in tears and said he always tries to cheer me up but its being so hard because he loves me so much and he really hoped that the Dr today would say that VL kept going down and i could still clear it.

it broke my heart.  
so today, im quite devastated.





-- Edited by Mano on Friday 25th of February 2011 08:22:37 PM


-- Edited by Mano on Friday 25th of February 2011 08:35:29 PM

__________________
29 co-infectedVL (28Feb)=140.000 / genotype 4/ fibroscan 6.2 / acute phase infected less 6 months
started 24 weeks treatment 180mg pegasys + 1000 riba 11th March 2011. UND at week 3

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