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Date Posted: 19:52:28 05/09/02 Thu
Author: Judi
Author Host/IP: adsl-34-57-203.mia.bellsouth.net / 67.34.57.203
Subject: Got my Viral Load results, need some expert interpretations

I am a 1B-on Pegintron/Ribavirin
No Liver Biopsy-Chicken
Got the results back on the PCR
Here is the story:
HCV RNA, PCR Quant Day Therapy Started:
1/04/02-
>1000000 Copies/ML
>600000 IU/ML
Date of New HCV RNA, PCR Quant
4/26/02
59167 Copies/ML
28800 IU.ML
Doctor gave the choice of continuing or not-lots of sides and auto-immune complications.
Because I lost my job, I have coverage until 10/21/02.
I chose to continue on the therapy-I have lost my mind, my hair and my job-but not my sense of humor, and I get to be pampered by the sweetest man in the world, and get my Ice Cream and Brownies in bed every night.
I need some feedback from you guys on my decision.
Thanks for your support as always. Don't know what I would do without you.
Judi

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Replies:

[> You call it "Ice Cream and Brownies"??????? -- Patsy, 20:20:10 05/09/02 Thu (Toronto-HSE-ppp3671620.sympatico.ca/65.95.188.87)

That's so cute!!! I just call it S-E-X lol!!!

I'm sorry I can't help you with your PCR results--I just don't know enough and am terrible at Math....I know there are people here who are very knowledgeable and can help you.


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[> [> Yes, because I can't remember the S word-Brain Fog -- Judi, 13:57:22 05/10/02 Fri (adsl-34-57-203.mia.bellsouth.net/67.34.57.203)

Lost my mind, hair, job, and am anti-cuddle right now-I am so broken out that it is really ice cream and brownies right now. But my guy is one in a million! Very patient!
Take care and thanks.

Judi


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[> Am no expert or doc, but............. -- karren, 20:26:44 05/09/02 Thu (HubX-mcr-24-95-111-59.midsouth.rr.com/24.95.111.59)

Judi, I am also a 1b (or wanna be, old joke, sorry) but everything my doc told me and what I have researched says the only way to tell damage and possible progression rate is through a liver biopsy. Mine, unlike others, was not painful, but they only had to do it once since I only weigh 101 lbs and there was not alot of fat to go through, if it were not for the biopsy, which my doc talked me into and was glad he did for I would not have treated without it after reading and hearing what this tx does, I turned out to be cirrhosed, stage 3-4 bridging fibrosed....I would never have known. There is alot of sites for medical information you can get some here too. Read one that says genotype 1b, being the hardest to treat, and if there is cirrhosis now shows evidence that this is the one that goes onto hepatocellular carcinoma even though tests and science did not show that in the past, science is learning more everyday about this virus. Viral load is not indicative of liver damage, the only way to tell is through a liver biopsy.


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[> [> Re: Am no expert or doc, but............. -- Judi, 13:53:41 05/10/02 Fri (adsl-34-57-203.mia.bellsouth.net/67.34.57.203)

Thanks for the reply. I have read lots about being 1B, and know that it is the hardest to treat. Will just go on and see if I go undetected. Take care and hope that you are doing well!

Best regards
Judi


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[> Hi Judi -- Susie, 21:03:32 05/09/02 Thu (bgp425870bgs.union01.nj.comcast.net/68.36.197.75)

I am able to compare your viral load in IU's. The other number they give you is the new measurement and it is about impossible to compare to the old way. So it is good they gave you both ways.

Viral load is really not considered changed unless there is a greater than 4 log difference. You certainly had that in going from 1 million to 59,000. I think you are wise to continue with the treatment. There have been some people who do get to undetected at the 6 month mark and you are not there yet. However, they usually do not sustain the response. The best indicator of sustaining a response is going undetected very early. I too wish you had had the biopsy. Would you consider having one after treatment is over if you end up a non-responder? They are finding that keeping people on very low doses of Peg (no riba)is helping their livers and without a biopsy you wouldn't know if your liver is far enough progressed to be a candidate for maintenance therapy.


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[> [> Yes I would have the biopsy. -- Judi, 22:19:29 05/09/02 Thu (adsl-34-57-203.mia.bellsouth.net/67.34.57.203)

Of course I would have the biopsy. I am sorry that I did not do one, but it is too late for that regret. I appreciate your reply. For some reason I feel that this will work in the long run, just a cock-eyed optimist. The testing that my doctor does is the one that shows up to >1000000 even if you have more so I am very happy to see the change that it is showing now. Thanks again for the feedback.

Judi


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[> Hi Judi, I didn't biopsy before tx, and now I kinda wish I had... not that bigga deal, tho'; I'm a high 1, or low 2 depending on whether an optimist reads the test (my doc said)... -- susinni, 02:22:22 05/10/02 Fri (susini1.Stanford.EDU/171.64.181.9)

First of all, I received treatment at the County clinic, and I was basically an indigent. It was an ability-to-pay program, and I was so broke I had no ability to pay!! (Schering's Commitment to Care program provided the meds for free.) Also, at that time my County's protocol was to forego biopsy if they were gonna treat anyway, and if there were little to no indications of severe damage.

My reasons for no biopsy at that time (before I knew they weren't gonna ask me to) were that: if my poor little liver was ill, how was poking it & abusing it gonna help. Now, of course, I wish I had done it, so that there would be a "benchmark" to judge whether treatment (I'm a non-responder) really did help. So, although I don't have a medical judgement that it helped my fibrosis stage, I now have a steady, PERMANENT job (2 years), and medical insurance, and, and.... It really helped me in the long run, 'cause I was a sick, tired worn-out cookie before tx!!
(Guess I needed to go on and on tonite, huh?)

Well, I think you're right -- the treatment's gonna work on you too!! (and even if it doesn't clear the virus, tx often gives the body & the li'l ol' liver a chance to regroup and cope with the virus like it did for oh-so-many years before now) (((Judi))) -susi


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[> [> Re: Hi Judi, I didn't biopsy before tx, and now I kinda wish I had... not that bigga deal, tho'; I'm a high 1, or low 2 depending on whether an optimist reads the test (my doc said)... -- Judi, 14:02:57 05/10/02 Fri (adsl-34-57-203.mia.bellsouth.net/67.34.57.203)

I agree with everything that you said, and I appreciate the kind words. Hope that your good health continues, as I just love the success stories. Take extra good care of yourself!


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[> chickens of the world unite.... -- Junobear, 10:43:38 05/10/02 Fri (216-220-251-81.midmaine.com/216.220.251.81)

I did not bother to biopsy either. I knew I needed to treat regardless of biopsy results because the brain fog and fatigue were so bad I could no longer work and earn a living. It was a 6-week wait to get one scheduled -- and I was chicken. So, I cut a deal with my doctor that he could do a biopsy after treatment if I relapsed. So far, I have not relapsed [knock on wood...].

I do not know how to interpret the new viral load numbers. It appears you are on the road to being at least partial responder which means your liver will probably benefit from treatment [histologic response]. The rest of the decision is whether to venture into the land of 'off label guerilla warfare' against the virus or be content with the likelihood of histologic response.

You are close to going undetected -- close enough that increasing the interferon dosage [if you can stand it...] might 'do the trick' for you. If you are going to continue treating and are truly and sincerely fanatical about losing 'Cyrus the Virus' at all costs, talk with your doctor about 1) induction or 2) upping the interferon dose and continuing to treat.

You are responding and are teetering on the edge of going undetected. It tends to be the 1b's that need a little higher dose or a 'burst' of high dose interferon induction [or both] to put them over the top. Induction means hitting the virus hard with the highest dose the patient can stand for a short period of time [usually 30 days] and then cutting back to normal or a bit higher than normal dosing for the duration.

I have a friend [a 1b] who almost responded to standard dosing but not quite. She treated three times, the third time at a higher dose, and the third time was a charm. She is a 1b sustained responder.

I have another friend who [before the advent of PEG] did a 60 day course of high dose daily interferon induction -- nailing the virus as hard as he could stand for as long as he could stand it until he found the dose that made him go undetected. He then cut back and treated at a higher dose than the rest of us for 48 weeks after going undetected [72 weeks in all]. He was a 1b with a 42,000,000 VL -- about as lousy a profile for SR as one can get. The one thing he had going for him was he did not have cirrhosis. He beat 'Cyrus the Virus' with one of the crappiest profiles for sustained response on the planet.

There are studies of high dose induction and increasing or tailoring dosage in 'close cases' of partial responders who are teetering on the edge. If you're planning to stick it out for the duration, these options are something to discuss with your doctor and think about...


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[> [> Bwok, Bwok, Bwok-Thanks in Chicken Language, Junobear -- Judi, 13:27:14 05/10/02 Fri (adsl-34-57-203.mia.bellsouth.net/67.34.57.203)

I think that I made the correct decision on continuing, and am printing your reply for when I go to the doctor at the end of the month. I appreciate the information. and Thanks again.

Judi aka Judiperfume


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