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
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
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
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?
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