Aa
VL gone up ????
hi, i just got back my baseline pcr and labs. labs all look good and got the ok to start tx. but i'm worried because my vl more then doubled since june when i was dx'd with hcv. my vl was 9 million then and this vl was almost 20 million! what would cause this jump in such a short time? i had the hep "A" vaccination about 3 weeks before this pcr, i think i had read it can cause the vl to go up, does anyone know about this or have any other explanation for this? is it worth me even attempting tx because i'm also 1a and now with this high vl thats 2 strikes against me acheiving svr. i was all geared up and ready to start tx then this. this damn disease just never lets up !!! you start to feel good and then get knocked back down. thanks for all your help here.
49M
1a
1/1
labs all normal
prob had this about 20 yrs
49M
1a
1/1
labs all normal
prob had this about 20 yrs
friole...thank you so much. I'm very excited about this result. I'm still cautious about it. I'm too scared to get my hopes squashed. I think until the next pcr, I'll just go about my business. Work's been keeping me extremely busy...which is good. Less time to worry and fret and watch the new hairs sprout from my scalp and the pounds creep back on. Can't complain about any of it though. I feel happy being off the meds. How have you been?
cuteus....thanks so much for the link! Not sure how you were able to tell I was a 1b. Was that just because I was a 1 in general as opposed to the 3 that relapsed? Also, didn't understand this paragraph:
"Results:
"HCV RNA by PCR taken at 1 and 3 months after completing TX correlated highly with viral loads obtained at 6 months. A total of 13 of the 60 pts (21.6%) with CR relapsed. All of the 3 month HCV RNA measurements were in exact agreement with those taken at 6 months (100% specificity). Only one (G 3) pt who had a CR after 24 weeks of TX became HCV RNA(+) between the 1 and 3 month blood draws (98% specificity)."
Does that mean that all the relapsers relapsed prior to their first month pcr, with the exception of the G3 pt? Or does that mean that everyone except for the one G3 pt had the same result (whether it was positive or negative) in the 6-month pcr as in the 3-month pcr?
Either way, this article really got me excited. Thank you so much for linking it to me.
Beagle....I emailed you. I hope you don't think it's spam. Let me know if it comes through okay.
Has your doc suggested any other course of action at this point, or is s/he wanting to take a wait-and-watch approach?
cuteus....thanks so much for the link! Not sure how you were able to tell I was a 1b. Was that just because I was a 1 in general as opposed to the 3 that relapsed? Also, didn't understand this paragraph:
"Results:
"HCV RNA by PCR taken at 1 and 3 months after completing TX correlated highly with viral loads obtained at 6 months. A total of 13 of the 60 pts (21.6%) with CR relapsed. All of the 3 month HCV RNA measurements were in exact agreement with those taken at 6 months (100% specificity). Only one (G 3) pt who had a CR after 24 weeks of TX became HCV RNA(+) between the 1 and 3 month blood draws (98% specificity)."
Does that mean that all the relapsers relapsed prior to their first month pcr, with the exception of the G3 pt? Or does that mean that everyone except for the one G3 pt had the same result (whether it was positive or negative) in the 6-month pcr as in the 3-month pcr?
Either way, this article really got me excited. Thank you so much for linking it to me.
Beagle....I emailed you. I hope you don't think it's spam. Let me know if it comes through okay.
Has your doc suggested any other course of action at this point, or is s/he wanting to take a wait-and-watch approach?
Was this your second time txing? My dr won't retreat at this point because of the thal and my HGB went as low as 6.1 with procrit and 2 transfusion. My HGB bsaeline was the same as yours. This is what doesn't make sense, geno 2B, VL 318,000 did 24 weeks without reducing meds. My 4 week post tx ALT 13 and AST 24, then my 3 month opost tx PCR relapsed with a viral load of 4 million.
Also before tx stage 0 grade 1.
About e-mail, a good one is ***@****, it may help us with thalassemia. LOL
Beagle
Also before tx stage 0 grade 1.
About e-mail, a good one is ***@****, it may help us with thalassemia. LOL
Beagle
Cuteus: Thanks so much. I'm still a little anxious. I'm trying not to think too much about it actually. As each test nears, I remind myself (it's always on my mind to some extent) that each one is increasing the odds, but I don't think I'll relax until I get good news at six months. And then after that, I'll probably still be holding my breath until one year post tx. Whew! Makes me worried. <g> I'm wondering if I'll ever feel "normal" enough again to go get a pedicure or consider a tattoo (which I've never done and probably won't do) or get my ears pierced again because I never did know where I got it the first place.
But for now, thank you. <g> I am grateful. Just still have those fingers crossed. I think they've been crossed now for two years. <g>
Tater-ToT: Thank you for the Snoopy dance! Those are great! And that's just what I did when I heard the news.
goofydad: Thank you for the kind words. I am hoping everyone I've met on this forum gets the kind of news I've gotten.
Finally, Mister Beagle Bailey....I am sorry to hear about your news, I really am. Thank you for sending your well wishes over.
As for advice, I can only tell you what I would do. And I'm thinking this has only been your first attempt. I think what kept me going was another forumite here had gone through tx three times before she achieved SVR. And at the time she posted, it had been a year since she had finished.
She also had wicked anemia. I'm trying to remember her name. It's been a while. I'll have to see if I have it on hard copy anywhere.
The point is, she kept going. I know it's not the right choice for everyone. I can't remember your stats, except that this was possibly your first time tx'g and that you have the same prob with thalassemia.
Have you talked to your doctor yet? Has he/she offered/suggested another round of tx? Sometimes they want to jump on it while the vl is still low and "wounded" from the first round. Sometimes it is better to wait until you yourself have "recovered" from the tx.
I waited maybe eight months before starting again. But a lot of it was preparation. First, I had to push and push and push to get retreated. Second, after being assigned a doctor more interested in my case, he went about trying to raise my hgb without procrit by using simple iron supplements. When that didn't work, he went ahead and started me on procrit before the actual tx started. And I think we did that for a month. He let me control exactly how long. I think he wanted two weeks. I wanted a month. I got up to 13.3 (wow, that felt great!) from my normal baseline of 11.3. And then we started tx.
I think thalassemia is an odd complication for most doctors to deal with. It wasn't even acknowledged by my first doctor. How is your current treating doc addressing it?
BTW, your genotype is 2b, yes? no? I was a 1b. I hope I stay a "was." In any event, it's my understanding that the "1's" are harder to treat.
How's your liver stats? Have you been graded or staged?
Dang, I wish we could email. What's the easiest way for us to exchange emails without breaking rules around here?
Anyway, please know that although it's so hard to deal with the disappointment of relapse or getting pulled off for nonresponding or getting pulled off due to sides, it's just a part of the process. I'm confident you will eventually beat this thing...just like everyone else. The research is surging ahead. Things are getting better. Please don't worry too much. I know that's easy for me to say. I'm still worrying about my next test.
But you've got a lot of friends here who are pulling for you. In the meantime, I'm trying to find out more about the thalassemia as I feel that's something I'm still going to have to address with my ferritin still ranging in the 1200 range. Anything new I find out, I will pass it on. And I'd love to email with you as soon as I find out the best way to exchange...if you're interested.
My best,
Angela
But for now, thank you. <g> I am grateful. Just still have those fingers crossed. I think they've been crossed now for two years. <g>
Tater-ToT: Thank you for the Snoopy dance! Those are great! And that's just what I did when I heard the news.
goofydad: Thank you for the kind words. I am hoping everyone I've met on this forum gets the kind of news I've gotten.
Finally, Mister Beagle Bailey....I am sorry to hear about your news, I really am. Thank you for sending your well wishes over.
As for advice, I can only tell you what I would do. And I'm thinking this has only been your first attempt. I think what kept me going was another forumite here had gone through tx three times before she achieved SVR. And at the time she posted, it had been a year since she had finished.
She also had wicked anemia. I'm trying to remember her name. It's been a while. I'll have to see if I have it on hard copy anywhere.
The point is, she kept going. I know it's not the right choice for everyone. I can't remember your stats, except that this was possibly your first time tx'g and that you have the same prob with thalassemia.
Have you talked to your doctor yet? Has he/she offered/suggested another round of tx? Sometimes they want to jump on it while the vl is still low and "wounded" from the first round. Sometimes it is better to wait until you yourself have "recovered" from the tx.
I waited maybe eight months before starting again. But a lot of it was preparation. First, I had to push and push and push to get retreated. Second, after being assigned a doctor more interested in my case, he went about trying to raise my hgb without procrit by using simple iron supplements. When that didn't work, he went ahead and started me on procrit before the actual tx started. And I think we did that for a month. He let me control exactly how long. I think he wanted two weeks. I wanted a month. I got up to 13.3 (wow, that felt great!) from my normal baseline of 11.3. And then we started tx.
I think thalassemia is an odd complication for most doctors to deal with. It wasn't even acknowledged by my first doctor. How is your current treating doc addressing it?
BTW, your genotype is 2b, yes? no? I was a 1b. I hope I stay a "was." In any event, it's my understanding that the "1's" are harder to treat.
How's your liver stats? Have you been graded or staged?
Dang, I wish we could email. What's the easiest way for us to exchange emails without breaking rules around here?
Anyway, please know that although it's so hard to deal with the disappointment of relapse or getting pulled off for nonresponding or getting pulled off due to sides, it's just a part of the process. I'm confident you will eventually beat this thing...just like everyone else. The research is surging ahead. Things are getting better. Please don't worry too much. I know that's easy for me to say. I'm still worrying about my next test.
But you've got a lot of friends here who are pulling for you. In the meantime, I'm trying to find out more about the thalassemia as I feel that's something I'm still going to have to address with my ferritin still ranging in the 1200 range. Anything new I find out, I will pass it on. And I'd love to email with you as soon as I find out the best way to exchange...if you're interested.
My best,
Angela
you don't know how nervous I was about you getting SVR with so many negatives and the anemia, this is why I think YOU WERE A 1B:http://hcvadvocate.org/news/reports/AASLD_2004/Posters_AASLD_2004.htm#A62
What great news. I didn't remember that this waa your second treatment. It sounds like you had a good plan going into it and it really helped the cause. Even with this I know you suffered immensely from the anemia. I am so glad your 3 month post was clear --
kathy
kathy
Maybe my last post was unclear, but your viral load may not have increased at all. It just may be that the test is not all that sensitive per the reference cited in my previous post.
if you are only a stage 1/1 you also have the option of waiting a year or two to see when the new drugs will be come available. they are looking good. if you had hep for 20 years you are a slow responder and could wait a while to see. i would love to have your numbers.
bobby
bobby
Ditto to what Bobby said. Vertex SVR data should be available in about 1 year, if not sooner.
Is it harder to achieve SVR if you have a high VL or the more liver damage you have the harder it is? My VL has gone up and down over the years also. I am starting tx next month. It always scares me to see my Vl go up. Last time it was 4mil.
My VL for tx:
Base - 72 million
week 8 - 2.4 million
week 12 - 1.8 million
week 24 - 2.9 million
We've attributed the changes to a riba reduction from 1200 mg to 600 mg at wk 5 and a slow increase to return to 1200 on wk 20.
Now that I've gone to 1400 mg on wk 26 we are re-starting from then looking for 2 log VL drop from original 72 million in 12 wks (or wk 38, but most likely wk 39 if I stick with 6 wk doc follow-up). If that turns out promising, then I've only got 65 more weeks of fun without sun on the HCV Peg/Riba/Procrit/Neupogen cocktail. I only hope that I don't need to start looking at adding a red-packed transfusion chaser into the mix, upon which I'm riding the fence right now.
Bottomline, it seems VL jumps around and that YES riba most definitiely seems to figure into the formula. I guess the overall goal is to see an overall decrease to UND, but that is not linear. In fact, most studies I've seen do claim more of an exponential drop at start of tx with a gradual approach to a linear drop as tx progresses.
Base - 72 million
week 8 - 2.4 million
week 12 - 1.8 million
week 24 - 2.9 million
We've attributed the changes to a riba reduction from 1200 mg to 600 mg at wk 5 and a slow increase to return to 1200 on wk 20.
Now that I've gone to 1400 mg on wk 26 we are re-starting from then looking for 2 log VL drop from original 72 million in 12 wks (or wk 38, but most likely wk 39 if I stick with 6 wk doc follow-up). If that turns out promising, then I've only got 65 more weeks of fun without sun on the HCV Peg/Riba/Procrit/Neupogen cocktail. I only hope that I don't need to start looking at adding a red-packed transfusion chaser into the mix, upon which I'm riding the fence right now.
Bottomline, it seems VL jumps around and that YES riba most definitiely seems to figure into the formula. I guess the overall goal is to see an overall decrease to UND, but that is not linear. In fact, most studies I've seen do claim more of an exponential drop at start of tx with a gradual approach to a linear drop as tx progresses.
VL can go up & down own it's own....
I had been infected approx 23 years before starting TX, I had little to No Liver Damage & treatment was optional both times!
Originally my VL was almost 5 million.... when I relapsed it quickly jumped up to 6 thousand & two weeks later before I restarted TX the baseline had dropped to 1000 on it's own!
Maybe our bodies try to fight it off naturally on it's own so we get spikes occationally..??? I Dunno, VL has nothing to do with amount of liver damage or lack there of...I guess one guess is as good as another, yet it happens all the time!
To start TX, or to wait with low to no damage is certainly a personal choice as there is no way of predicting when or how fast it will progress... & the lower the VL & the younger we are the better the chance at beating it... & none of us are getting any younger...
If I should relapse again, I will be waiting on the newer drugs, but merely due to financial reasons!
Glad you got the Okay to get started... good luck with your decission "If" you are trying to make one!
:)
I had been infected approx 23 years before starting TX, I had little to No Liver Damage & treatment was optional both times!
Originally my VL was almost 5 million.... when I relapsed it quickly jumped up to 6 thousand & two weeks later before I restarted TX the baseline had dropped to 1000 on it's own!
Maybe our bodies try to fight it off naturally on it's own so we get spikes occationally..??? I Dunno, VL has nothing to do with amount of liver damage or lack there of...I guess one guess is as good as another, yet it happens all the time!
To start TX, or to wait with low to no damage is certainly a personal choice as there is no way of predicting when or how fast it will progress... & the lower the VL & the younger we are the better the chance at beating it... & none of us are getting any younger...
If I should relapse again, I will be waiting on the newer drugs, but merely due to financial reasons!
Glad you got the Okay to get started... good luck with your decission "If" you are trying to make one!
:)
Just think of it this way......with 20mil v/l you'll only have to get to a much higher number to hit the two log drop! ;)
Hey...I know it's not much but v/l isn't really that big a deal - it mostly is in our minds. :)
Hey...I know it's not much but v/l isn't really that big a deal - it mostly is in our minds. :)
man you peeps are quick, thanks to all of you for the fast responses. i was hoping to hear someone say they heard that the hep vac shots can cause the vl to increase. can it be possible that the virus is just waking up and will wreak havoc quickly? what is really puzzling to me is i have been doing everything right since i found out i had hcv in june, no alcohol(was only drinking maybe 6 beers a month for last 5 yrs),lost 15 lbs (now 200 lbs, 6'0), eating right, taking milk thistle & multi w/out iron. on top of that i had stopped smoking , drinking (a few times a week, binge drinking) about 5 yrs ago. i actually felt better before i quit the heavier partying 5 yrs ago. it was almost like abusing my body kept the virus at bay. for about 4 yrs i kept saying to myself why dont i feel better now that i have done the right thing. susprise! then this past june i was told i have hcv, something i never even heard of. in a few short months i have spent endless hours educating myself about this dreaded disease and one thing is certain it is very unpredictable!
That would be below 600,000 IU/ml, not "600 IU/ml" as stated in last sentence of previous post.
Thank you! I'm feeling pretty good. I had quite a battle with the whole anemia thing. This was actually my second attempt at tx...my first completion, though I went longer than average...about 62 weeks or so. But my hgb has come up to 10.8 on its own. I feel much better. Just keeping my fingers crossed for the next one. Am ready to shed this whole hep c cloak.
I'm starting to be less and less shy about telling people though. I want people to get tested. I found out through routine testing during a physical because I wanted to train for a marathon. Because I'm not in any of the risk groups, I found out probably a year later than I should have. My tests showed increased enzymes, but the doc thought nothing of it because I'm not at risk.
Anyway, hopefully the research comes through. I don't wish tx on anyone.
How are you doing? I've been a little out of the loop, so there seems to be some "new faces." <g> Are you tx'ing or have you tx'd? I hope things are going well for you whatever stage you're at. <g>
Angela
I'm starting to be less and less shy about telling people though. I want people to get tested. I found out through routine testing during a physical because I wanted to train for a marathon. Because I'm not in any of the risk groups, I found out probably a year later than I should have. My tests showed increased enzymes, but the doc thought nothing of it because I'm not at risk.
Anyway, hopefully the research comes through. I don't wish tx on anyone.
How are you doing? I've been a little out of the loop, so there seems to be some "new faces." <g> Are you tx'ing or have you tx'd? I hope things are going well for you whatever stage you're at. <g>
Angela
I am on week 20/48. It has been a rough road. I am sure glad I am not working, I know I couldn't have done it. I know what you mean about getting tired of wearing the cloak. Sometimes, I am afraid to tell people and other times I bring it up.
I bet it feels great to be off these dreadful drugs!
I bet it feels great to be off these dreadful drugs!
It feels great to be off the drugs. I feel like a new person. The biggest improvement for me has been my emotional/mental state. The other great improvement was my energy level.
I'm still a little low on the hgb scale, and I'm still waiting for my ferritin levels to drop some more. What else? Hair loss seemed to continue for a couple months afterwards, but seems to have slowed down. Hopefully, it'll come back in all its "glory." <g>
But other than that, I can't complain. Life's good.
Angela
I'm still a little low on the hgb scale, and I'm still waiting for my ferritin levels to drop some more. What else? Hair loss seemed to continue for a couple months afterwards, but seems to have slowed down. Hopefully, it'll come back in all its "glory." <g>
But other than that, I can't complain. Life's good.
Angela
My gastro told me viral load couldn't tell him anything. He said viral load would go up and down on its own. It was the bx he wanted to see to determine were I was at. I'll be starting treatment soon myself. I keep wondering if I should wait for new drugs.
51 male
geno 2b
2/2
viral load 9,000,000 IU/50ML
have had for 30 years
51 male
geno 2b
2/2
viral load 9,000,000 IU/50ML
have had for 30 years
man! or woman! I was wondering about your for weeks! and your anemia! THAT IS GREAT NEWS!!! 3 months and you are negative!! You did it!! it is practically over, only a freak of nature will make that virus show its head again! CONGRATULATIONS!
don't leave your seat on cloud 9, it has your name on it!
don't leave your seat on cloud 9, it has your name on it!
Your name makes me CRAVE Sushi...LoL
That's Fabulous.. Hope to be following in your footsteps soon...
Doing the Happy Snoopy Dance For You!!!
;)
That's Fabulous.. Hope to be following in your footsteps soon...
Doing the Happy Snoopy Dance For You!!!
;)
Congratulation!!!!!!!!!! I am so happy for you.
Can you give me some advise as you and I have thalassemia and I found out last week on my 3 month post tx PCR that I relapsed. Any help is greatly needed.
Beagle
Can you give me some advise as you and I have thalassemia and I found out last week on my 3 month post tx PCR that I relapsed. Any help is greatly needed.
Beagle
COPY: my vl was 9 million then and this vl was almost 20 million! what would cause this jump in such a short time?
-----------------------------------------------------
Quite possibly nothing.
There may be no difference as the RNA assays (tests)can have a variance of 1 log. Therefore 9 million IU/ml and 20 million IU/ml could actually represent an identical amount of virus in the
blood.*
This does not mean however, that low pre-tx viral load -- under 600,000 IU/ml -- is not a positive predictor of SVR, as a number of studies suggest this, and I guess that has to do with the mathematics of log drops but not sure. In fact, I threw around the idea time ago the concept of timing treatment to coincide with VL dips. MKAndrew in his recent post has thrown around the same idea in terms of his own future treatment. But based on the module (see below) this probably would only work if VL is below 600 IU/ml and not make much difference as in the variance with Copyman.
* Source: Shiffman, Edimology and Tx Module, Clincal Care Option Web Site, Slide 24. http://www.clinicaloptions.com/Hepatitis.aspx
-----------------------------------------------------
Quite possibly nothing.
There may be no difference as the RNA assays (tests)can have a variance of 1 log. Therefore 9 million IU/ml and 20 million IU/ml could actually represent an identical amount of virus in the
blood.*
This does not mean however, that low pre-tx viral load -- under 600,000 IU/ml -- is not a positive predictor of SVR, as a number of studies suggest this, and I guess that has to do with the mathematics of log drops but not sure. In fact, I threw around the idea time ago the concept of timing treatment to coincide with VL dips. MKAndrew in his recent post has thrown around the same idea in terms of his own future treatment. But based on the module (see below) this probably would only work if VL is below 600 IU/ml and not make much difference as in the variance with Copyman.
* Source: Shiffman, Edimology and Tx Module, Clincal Care Option Web Site, Slide 24. http://www.clinicaloptions.com/Hepatitis.aspx
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