4 week V/L results dissapointed but trying to stay positive and realistic
KMMM said
Nov 29, 2012
My husband got back his 4 week viral load this morning. When he began he was 600,000 and his viral load at the end of 4 weeks with just interferon and rib was 105. The nurse said that this was good and that Rob is considered a "rapid responder". He begain the broceprevir about 10 days ago and will have another viral load done at the end of 4 weeks on all 3 meds.
Our nurse was very positive but did say that they want the viral load to be under 40-50 at the end of the next 4 weeks.
Ronna
Bouba said
Nov 29, 2012
Here is the chart IU into logs for a quick refrerence:
Hi Adam, I`m glad your son is ok, no wonder you weren`t at your best for that early morning appointment! Anyway the main thing is that you`re on course and heading in the right direction, and actually one of the main benefits of joining a forum such as this one is being able to share information with each other and learning from other people who are in the same boat.
Keep on with the good work! All the best, Jill xx
-- Edited by Cinnamon Girl on Thursday 29th of November 2012 10:32:25 AM
mallani said
Nov 29, 2012
Hi Adam, if it's 6 log units, your initial Viral Load was 1 million i.u./ml. Remember Incivek is pretty new in the UK, and there's not a lot of experience out there. Try to be proactive and read as much as you can. There is a 'Sticky' post in General Discussion called 'Incivek (telaprevir) Fact Sheet'. For your next appointment, it's useful to write down your list of questions, as it's easy to forget them. Cheers.
Adamos40 said
Nov 28, 2012
Hi Malcolm,
Think it was 6 log units. Wasn't at my best today when I saw the nurse, but she is getting copies of V/L bloods for next appointment (2 weeks), so will post them then. Saw your post about your missed dose.... You're probably fed up of hearing it, but don't beat yourself up mate (something I have a PHD in)!! Hope you're having a good day, all the best, Adam
Adamos40 said
Nov 28, 2012
Hi Jill,
I know what you mean. My nurse is very supportive, non judgmental and affirming. However she does seem to lack some info about the treatment. She was unable to tell me today what method is used to test V/L. She didn't initially tell me about the 20g fat needed (she did say have a milky drink before the incivo). Then there was the **** up with my ribavarin dose (partly my fault also). She did say something todayabout a quantative vs qualiative test for V/L. To be honest i wasnt at my best. My appt was 8am and I'd been in A&E with my son (he's fine) until 1.30 am last night, so my brain fog was pretty dense!! Forgot most of what I wanted to ask. Will do better next week But yeah, looking good, down from 6 million to >11
Hope you're well, all the best, Adam
Cinnamon Girl said
Nov 27, 2012
Hi Adam, I live in the UK and I know how difficult it can be trying to get sensible information from your medical team. My nurse was lovely and very supportive but I had to drag any useful facts out of her...and she seemed quite surprised that I actually wanted to know! Good luck with your appointment tomorrow, hope you get some clarification then. It`s looking good for you anyway!
All best, Jill xx
Adamos40 said
Nov 27, 2012
Hi Malcolm,
Just quoting what my nurse told me. She said my V/L was to the power of 6 at my pre tx V/L bloods. Whrn She gave my my 4 week result a few days ago she said it had been "to the power of 6, or 6 million" and its come down to 11. Am seeing her tomorrow morning so will hopefully get some clarity, and find out what test they are using to measure V/L, cheers, Adam
marktrux said
Nov 27, 2012
My 4 week test came back @ under 43(the quantitative limit), 8 week test was UND. I visited my Dr. at week 12 and he explained to me that if a test comes back as below the quantitative limit. And the following test comes back as UND, then the first test can also be considered UND. I can't swear that the info he gave me is true but it made me feel a lot better about treatment. At any rate, going from 6 million to 11 in such a short period of time is truely amazing!
Adamos40 said
Nov 27, 2012
Will do Brian and thanks for your support. Hang in there yourself, stay in touch. All the best, Adam
gatekeep said
Nov 27, 2012
Adamos40 wrote:
Just had my first V/L results back. On starting triple therapy my V/L was to the power of 6 (6 million). My first V/L result was 11. My nurse said this is not great news, as she was hoping it would come back as UND, however she did say it was a significant reduction. I have only been on the proper ribavarin dose for the last 2 weeks, so hopefully by week 8 I will be UND. Am wandering is this a good result? I see many people getting UND at week 4 and staying UND throughout. Feel a tad dissapointed but need to stay focused and positive. Am half way through the incivo now. Cant wait to finish, 6 weeks to go. Any feedback much appreciated. Best wishes to all, Adam
I also was 6 mill. My four week was 61, I was disappointed but the MD wasn't surprised because of my 3.5-4 fibrosis. He was going to keep me on the whole 40 weeks even if I was und.
Welcome to the club. Hang in there ... Brian
mallani said
Nov 26, 2012
Hi Adam, I'm a bit confused about your initial VL. You said it was '..to the power of 6 ( 6 million)..'. Does that mean 6 Log units? 6 Log units is a VL of 1 million. It doesn't matter much but it's useful to know, so you can calculate your 4 week VL drop.
-- Edited by mallani on Wednesday 28th of November 2012 02:05:06 PM
Adamos40 said
Nov 26, 2012
Hi Joanne,
Thanks for your message of strength & hope. Nurse said I will be on Incivo for 12 weeks in total (so 6 to go). Will continue with interferon & Ribavarin for another 18 weeks, though it is possible this may be extended if I don't hit UND. Good luck with your Tx, will keep an eye on how you're doing. Day at a time eh!! All the best, Adam
Adamos40 said
Nov 26, 2012
Hi Malcolm,
Thanks for your feedback. Am seeing nurse wednesday so will ask her for print out of latest results. All the best, Adam
mallani said
Nov 26, 2012
Hi Adam, forgot to say you will only do 12 weeks of Incivek whatever, as it's too toxic for longer periods. You will continue with the Peg and Riba for 12, 24 or 36 weeks depending on what your doc decides. Cheers.
JoAnneh said
Nov 26, 2012
Adam, I started triple tx May 21, 2012. Can't back UND at 2 weeks. Doctor congratulated me And said now you only have 24 weeks. My 4 week lab came back DET so I am Doing 48 weeks!!! I was upset a while but Now on week 28 of 48 and just so thankful For the opportunity to beat Hep C. I also believe since I have cirrhosis and Geno 1a it is best I do 48 weeks anyway. But gee.... It's a long road but we have each other To help us thru it. Keep us updated, maybe u will get to stop in 6 weeks.
JoAnne
mallani said
Nov 26, 2012
Hi Adam, That is a weird result! As you are in the UK, you would be tested using the Roche COBAS Taqman RT PCR test v.2, or the Abbott RT PCR test. Both of these have a lower limit of detection of 15 i.u./ml. If using the older Roche or Abbott tests, the LLD is 25. To get as low as 10, 5 or 2 you need a TMA test, which is not available in UK (or Australia). As I said to Bouba, some Labs do not ever say Undetected, which is a pain. At least mine says TND ( Target not Detected). I cannot understand how you can have a VL of 11- doesn't sound right. Try to find out which test your Lab is using and let us know. It would be great to get a printout of the result. Cheers.
Bouba said
Nov 26, 2012
Adam, usually they give 24 weeks protocol if you are have showed RVR, i.e. UND at 4 weeks. Otherwise, you would be at 48 weeks.
So, it looks like you are considrered as UND. Cheers!
Adamos40 said
Nov 26, 2012
Thanks mate. I've been told I will be doing 24 weeks triple (12 weeks incivo) and then continue with the interferon and ribavarin. Keeping my fingers and everything else crossed for you. Thanks again for your support, all the best, Adam
kiwi said
Nov 26, 2012
hey adam. dont worry.
i was over 17 million when i started treatment. and at week 4 i was down to 1300, which is a huge drop. no it wasnt undetected, but next vl test it was. the only difference was i had to do 48 weeks treatment, if i had been UND at 4 weeks then i would have only to do 24 weeks.
i have stayed UND since then, and ive finished treatment now. fingers crossed it stays that way. but at the start of treatment a huge drop is a positive.
definately stay positive mate. and hang in there.
Adamos40 said
Nov 26, 2012
Hi again Bouba,
Just texted my nurse to ask which method they use to measure V/L. She said she is not 100% sure!! She said the assay range is between 12 - 100000000. She said although mine is less than 12 (11), it can't be written as UND at present. Am seeing her Wednesday morning so hopefully will be able to get some clarity then. Best wishes, Adam
Bouba said
Nov 26, 2012
By the way, Malcolm said the same in one of the last week's threads about how they do it in Australia : "<15 TND' with the TND meaning Target Not Detected".
Adamos40 said
Nov 26, 2012
Hi Bouba,
Thanks for your swift reply. Not sure what method they use but will ask this week at my next appointment with my nurse. Best wishes
Bouba said
Nov 26, 2012
Adam, hi,
Bit puzzled... Are you sure your nurse knows what she is talking about? Which method did they use for viraemia? In Switzerland they do the Abbott one. The detection threshold is < 15. They can not detect under 15, meaning it is UND!!!
Wonder how did they get 11? I got my 3 week labs last Friday, saying < 15. My hepatologist reconfirmed it meant they could not detect it. The others may be able to give you a better feedback but my first impression is that you are UND.
Adamos40 said
Nov 26, 2012
Just had my first V/L results back. On starting triple therapy my V/L was to the power of 6 (6 million). My first V/L result was 11. My nurse said this is not great news, as she was hoping it would come back as UND, however she did say it was a significant reduction. I have only been on the proper ribavarin dose for the last 2 weeks, so hopefully by week 8 I will be UND. Am wandering is this a good result? I see many people getting UND at week 4 and staying UND throughout. Feel a tad dissapointed but need to stay focused and positive. Am half way through the incivo now. Cant wait to finish, 6 weeks to go. Any feedback much appreciated. Best wishes to all, Adam
My husband got back his 4 week viral load this morning. When he began he was 600,000 and his viral load at the end of 4 weeks with just interferon and rib was 105. The nurse said that this was good and that Rob is considered a "rapid responder". He begain the broceprevir about 10 days ago and will have another viral load done at the end of 4 weeks on all 3 meds.
Our nurse was very positive but did say that they want the viral load to be under 40-50 at the end of the next 4 weeks.
Ronna
Here is the chart IU into logs for a quick refrerence:
http://www.hepatitis-central.com/hcv/hepatitis/loadchart.html
Hi Adam, I`m glad your son is ok, no wonder you weren`t at your best for that early morning appointment! Anyway the main thing is that you`re on course and heading in the right direction, and actually one of the main benefits of joining a forum such as this one is being able to share information with each other and learning from other people who are in the same boat.
Keep on with the good work!
All the best, Jill xx
-- Edited by Cinnamon Girl on Thursday 29th of November 2012 10:32:25 AM
Hi Adam, if it's 6 log units, your initial Viral Load was 1 million i.u./ml. Remember Incivek is pretty new in the UK, and there's not a lot of experience out there. Try to be proactive and read as much as you can. There is a 'Sticky' post in General Discussion called 'Incivek (telaprevir) Fact Sheet'. For your next appointment, it's useful to write down your list of questions, as it's easy to forget them. Cheers.
Hi Malcolm,
Think it was 6 log units. Wasn't at my best today when I saw the nurse, but she is getting copies of V/L bloods for next appointment (2 weeks), so will post them then. Saw your post about your missed dose.... You're probably fed up of hearing it, but don't beat yourself up mate (something I have a PHD in)!! Hope you're having a good day, all the best, Adam
Hi Jill,
I know what you mean. My nurse is very supportive, non judgmental and affirming. However she does seem to lack some info about the treatment. She was unable to tell me today what method is used to test V/L. She didn't initially tell me about the 20g fat needed (she did say have a milky drink before the incivo). Then there was the **** up with my ribavarin dose (partly my fault also). She did say something todayabout a quantative vs qualiative test for V/L. To be honest i wasnt at my best. My appt was 8am and I'd been in A&E with my son (he's fine) until 1.30 am last night, so my brain fog was pretty dense!! Forgot most of what I wanted to ask. Will do better next week
But yeah, looking good, down from 6 million to >11
Hope you're well, all the best, Adam
Hi Adam, I live in the UK and I know how difficult it can be trying to get sensible information from your medical team. My nurse was lovely and very supportive but I had to drag any useful facts out of her...and she seemed quite surprised that I actually wanted to know! Good luck with your appointment tomorrow, hope you get some clarification then. It`s looking good for you anyway!
All best, Jill xx
Hi Malcolm,
Just quoting what my nurse told me. She said my V/L was to the power of 6 at my pre tx V/L bloods. Whrn She gave my my 4 week result a few days ago she said it had been "to the power of 6, or 6 million" and its come down to 11. Am seeing her tomorrow morning so will hopefully get some clarity, and find out what test they are using to measure V/L, cheers, Adam
My 4 week test came back @ under 43(the quantitative limit), 8 week test was UND. I visited my Dr. at week 12 and he explained to me that if a test comes back as below the quantitative limit. And the following test comes back as UND, then the first test can also be considered UND. I can't swear that the info he gave me is true but it made me feel a lot better about treatment. At any rate, going from 6 million to 11 in such a short period of time is truely amazing!
Will do Brian and thanks for your support. Hang in there yourself, stay in touch. All the best, Adam
Hi Adam, I'm a bit confused about your initial VL. You said it was '..to the power of 6 ( 6 million)..'. Does that mean 6 Log units? 6 Log units is a VL of 1 million. It doesn't matter much but it's useful to know, so you can calculate your 4 week VL drop.
-- Edited by mallani on Wednesday 28th of November 2012 02:05:06 PM
Hi Joanne,
Thanks for your message of strength & hope. Nurse said I will be on Incivo for 12 weeks in total (so 6 to go). Will continue with interferon & Ribavarin for another 18 weeks, though it is possible this may be extended if I don't hit UND. Good luck with your Tx, will keep an eye on how you're doing. Day at a time eh!! All the best, Adam
Hi Malcolm,
Thanks for your feedback. Am seeing nurse wednesday so will ask her for print out of latest results. All the best, Adam
Hi Adam, forgot to say you will only do 12 weeks of Incivek whatever, as it's too toxic for longer periods. You will continue with the Peg and Riba for 12, 24 or 36 weeks depending on what your doc decides. Cheers.
Can't back UND at 2 weeks. Doctor congratulated me
And said now you only have 24 weeks.
My 4 week lab came back DET so I am
Doing 48 weeks!!! I was upset a while but
Now on week 28 of 48 and just so thankful
For the opportunity to beat Hep C.
I also believe since I have cirrhosis and
Geno 1a it is best I do 48 weeks anyway.
But gee.... It's a long road but we have each other
To help us thru it.
Keep us updated, maybe u will get to stop
in 6 weeks.
JoAnne
Hi Adam, That is a weird result! As you are in the UK, you would be tested using the Roche COBAS Taqman RT PCR test v.2, or the Abbott RT PCR test. Both of these have a lower limit of detection of 15 i.u./ml. If using the older Roche or Abbott tests, the LLD is 25. To get as low as 10, 5 or 2 you need a TMA test, which is not available in UK (or Australia). As I said to Bouba, some Labs do not ever say Undetected, which is a pain. At least mine says TND ( Target not Detected). I cannot understand how you can have a VL of 11- doesn't sound right. Try to find out which test your Lab is using and let us know. It would be great to get a printout of the result. Cheers.
Adam, usually they give 24 weeks protocol if you are have showed RVR, i.e. UND at 4 weeks. Otherwise, you would be at 48 weeks.
So, it looks like you are considrered as UND. Cheers!
Thanks mate. I've been told I will be doing 24 weeks triple (12 weeks incivo) and then continue with the interferon and ribavarin. Keeping my fingers and everything else crossed for you. Thanks again for your support, all the best, Adam
hey adam. dont worry.
i was over 17 million when i started treatment. and at week 4 i was down to 1300, which is a huge drop. no it wasnt undetected, but next vl test it was. the only difference was i had to do 48 weeks treatment, if i had been UND at 4 weeks then i would have only to do 24 weeks.
i have stayed UND since then, and ive finished treatment now. fingers crossed it stays that way. but at the start of treatment a huge drop is a positive.
definately stay positive mate. and hang in there.
Hi again Bouba,
Just texted my nurse to ask which method they use to measure V/L. She said she is not 100% sure!! She said the assay range is between 12 - 100000000. She said although mine is less than 12 (11), it can't be written as UND at present. Am seeing her Wednesday morning so hopefully will be able to get some clarity then. Best wishes, Adam
By the way, Malcolm said the same in one of the last week's threads about how they do it in Australia : "<15 TND' with the TND meaning Target Not Detected".
Hi Bouba,
Thanks for your swift reply. Not sure what method they use but will ask this week at my next appointment with my nurse. Best wishes
Adam, hi,
Bit puzzled... Are you sure your nurse knows what she is talking about? Which method did they use for viraemia? In Switzerland they do the Abbott one. The detection threshold is < 15. They can not detect under 15, meaning it is UND!!!
Wonder how did they get 11? I got my 3 week labs last Friday, saying < 15. My hepatologist reconfirmed it meant they could not detect it. The others may be able to give you a better feedback but my first impression is that you are UND.
Just had my first V/L results back. On starting triple therapy my V/L was to the power of 6 (6 million). My first V/L result was 11. My nurse said this is not great news, as she was hoping it would come back as UND, however she did say it was a significant reduction. I have only been on the proper ribavarin dose for the last 2 weeks, so hopefully by week 8 I will be UND. Am wandering is this a good result? I see many people getting UND at week 4 and staying UND throughout. Feel a tad dissapointed but need to stay focused and positive. Am half way through the incivo now. Cant wait to finish, 6 weeks to go. Any feedback much appreciated. Best wishes to all, Adam