Good one, Paul. Did you get the results for the rs 8099917 site? Cheers.
Paul B said
Jun 17, 2014
Well, got my IL28 status result back today. CC, so that is a positive result !!
longld said
Jun 14, 2014
So.......we have a Tasmanian fighting the devil of HCV - some humour in there.....One of the best bottles of Wine I ever drank came from this beautiful island....cheers and best of luck in the new treatment....
lee
Paul B said
Jun 14, 2014
Thanks Malcolm. Printed that out for reference purposes. Looking forward to getting some numbers back soon.
mallani said
Jun 14, 2014
Hi Paul,
I did a post about Gene testing for HepC patients some time ago. It's a 'Sticky' in Knowledge Base. If you read the initial post, you will see that there are 2 important snp's near IL28B. I was C/T at rs 12979860 but T/T for the rs 8099917 site, which my doc thinks is more important for Australians.
As you've started treatment, this may not be of interest. However if I was T/T and G/G at these sites, I probably wouldn't bother with an Interferon based treatment. The data from the old Sprint and Respond Trials, showed the importance of IL28B. Here's one article:
Interesting info: "Studies have shown that people with the CC IL28B gene have a better response to treatment than those with the TT or CT genotypes when taking pegylated interferon and ribavirin alone. IL28B doesn't appear to affect your response when you are also taking DAAs as part of your treatment schedule".
I am guessing that most people here already know this.
Paul B said
Jun 14, 2014
Well I am pretty encouraged to think that I am termed as a relapser as the prospects are so positive for those who are categorised as such. I was amazed at how quickly I got on the programme, it all happened within three weeks of my first appointment. . My nurse commented that she did not know how I got on the programme so quickly !! You will no doubt be amazed to hear that there is a 10 year waiting list to get on treatment here. Apparently 350 people on the list and the number on treatment is 14-16 at any one time. The budget for health down here is miniscule compared to other states.
So my next appointment is on 24/6, I will know VL and will ask about IL28B. I asked the nurse about VL and she said did not seem to place much importance on it. Curious though given that a lower VL is indicative of the potential for response to tx.
-- Edited by Paul B on Saturday 14th of June 2014 05:41:46 AM
mallani said
Jun 14, 2014
Hi Paul,
Sounds as if you are a relapser. As you're in Tasmania, make sure you are up on the Victrelis protocol. As far as I know, there were no Clinical Trials there, and this is a new combo for many Hepatologists.
In Brisbane, everyone has their VL and IL28B results before treatment is discussed. Cheers.
Paul B said
Jun 13, 2014
As far as IL28B status is concerned I have no clue. However, had some baseline tests done on Tuesday (first day of tx) so maybe they did it then. They did test for viral load and I am keen to know how that comes back.
When I was treated in 95/98 the docs got a bit excited and told me that they thought I was certain to be cured... so I am guessing that tests must have indicated that in some way. So on that basis and what was stated in the correspondence I received, I am assuming that I am a relapser. Does that sound right ?
mallani said
Jun 13, 2014
Hi Paul,
Back in 1995 and 1998, we only had the RIBA Test in Australia. This was given as a positive or negative result. A negative result meant no virus, but the LLOD was about 1,000.
Basically, if you had a positive RIBA and became negative on the Interferon +/- Riba, you were considered a responder. If you then became positive again, you were called a relapser.
This is all about Interferon sensitivity. With the Victrelis protocol, you will know exactly what your status is. The more the VL drops after the 4 week lead-in, the more responsive you are to Interferon. This is important, as RAV's quickly develop to Victrelis, and you need the Interferon to deal with these. Did you have your IL28B status done? If you have the CC allele, you have a much higher chance of being Interferon sensitive. I was CT, but from my previous treatments, I knew I responded well to Interferon. I had a 3 log drop after the lead-in from a starting VL of 1.28M. Best of luck, and make sure they don't forget to do your 4 week VL.
Paul B said
Jun 13, 2014
As I have mentioned in a previous post, I had undergone tx twice previously. I lasted 12 weeks in 1995, (non peg Interferon), my ALT had dropped to 30, AST 32, only to climb back up, which I am guessing is why they discontinued at week 12. Fast forward to 1998 and non peg Interferon/Ribavirin and once again, LFTs normalised initially but went back up, I quit at week 10 as I could not handle the sx.
So I made an inquiry in 2009 as to the possibilities moving forward. I had moved state, from Victoria to Tasmania and therefore would need to connect with another clinic. The original clinic sent me a few documents relating to tx history but the records were incomplete. However, there was enough to be helpful and give me the basics of where I was at during that 1995 98 period.
So the gastro commented at the end of the accompanying letter, that for treatment purposes moving forward, that I would be considered a relapser. The nurse who is managing me at the moment said she wouldn't consider me a relapser. From the perspective of achieving SVR, relapser is what I want to be... any thoughts ?
Good one, Paul. Did you get the results for the rs 8099917 site? Cheers.
Well, got my IL28 status result back today. CC, so that is a positive result !!
So.......we have a Tasmanian fighting the devil of HCV - some humour in there.....One of the best bottles of Wine I ever drank came from this beautiful island....cheers and best of luck in the new treatment....
lee
Thanks Malcolm. Printed that out for reference purposes. Looking forward to getting some numbers back soon.
Hi Paul,
I did a post about Gene testing for HepC patients some time ago. It's a 'Sticky' in Knowledge Base. If you read the initial post, you will see that there are 2 important snp's near IL28B. I was C/T at rs 12979860 but T/T for the rs 8099917 site, which my doc thinks is more important for Australians.
As you've started treatment, this may not be of interest. However if I was T/T and G/G at these sites, I probably wouldn't bother with an Interferon based treatment. The data from the old Sprint and Respond Trials, showed the importance of IL28B. Here's one article:
http://www.genengnews.com/gen-news-highlights/phase-iii-data-suggest-il28b-genotyping-helps-predict-response-to-merck-s-hcv-drug/81244919/
Interesting info: "Studies have shown that people with the CC IL28B gene have a better response to treatment than those with the TT or CT genotypes when taking pegylated interferon and ribavirin alone. IL28B doesn't appear to affect your response when you are also taking DAAs as part of your treatment schedule".
I am guessing that most people here already know this.
Well I am pretty encouraged to think that I am termed as a relapser as the prospects are so positive for those who are categorised as such. I was amazed at how quickly I got on the programme, it all happened within three weeks of my first appointment. . My nurse commented that she did not know how I got on the programme so quickly !! You will no doubt be amazed to hear that there is a 10 year waiting list to get on treatment here. Apparently 350 people on the list and the number on treatment is 14-16 at any one time. The budget for health down here is miniscule compared to other states.
So my next appointment is on 24/6, I will know VL and will ask about IL28B. I asked the nurse about VL and she said did not seem to place much importance on it. Curious though given that a lower VL is indicative of the potential for response to tx.
-- Edited by Paul B on Saturday 14th of June 2014 05:41:46 AM
Hi Paul,
Sounds as if you are a relapser. As you're in Tasmania, make sure you are up on the Victrelis protocol. As far as I know, there were no Clinical Trials there, and this is a new combo for many Hepatologists.
In Brisbane, everyone has their VL and IL28B results before treatment is discussed. Cheers.
As far as IL28B status is concerned I have no clue. However, had some baseline tests done on Tuesday (first day of tx) so maybe they did it then. They did test for viral load and I am keen to know how that comes back.
When I was treated in 95/98 the docs got a bit excited and told me that they thought I was certain to be cured... so I am guessing that tests must have indicated that in some way. So on that basis and what was stated in the correspondence I received, I am assuming that I am a relapser. Does that sound right ?
Hi Paul,
Back in 1995 and 1998, we only had the RIBA Test in Australia. This was given as a positive or negative result. A negative result meant no virus, but the LLOD was about 1,000.
Basically, if you had a positive RIBA and became negative on the Interferon +/- Riba, you were considered a responder. If you then became positive again, you were called a relapser.
This is all about Interferon sensitivity. With the Victrelis protocol, you will know exactly what your status is. The more the VL drops after the 4 week lead-in, the more responsive you are to Interferon. This is important, as RAV's quickly develop to Victrelis, and you need the Interferon to deal with these. Did you have your IL28B status done? If you have the CC allele, you have a much higher chance of being Interferon sensitive. I was CT, but from my previous treatments, I knew I responded well to Interferon. I had a 3 log drop after the lead-in from a starting VL of 1.28M. Best of luck, and make sure they don't forget to do your 4 week VL.
As I have mentioned in a previous post, I had undergone tx twice previously. I lasted 12 weeks in 1995, (non peg Interferon), my ALT had dropped to 30, AST 32, only to climb back up, which I am guessing is why they discontinued at week 12. Fast forward to 1998 and non peg Interferon/Ribavirin and once again, LFTs normalised initially but went back up, I quit at week 10 as I could not handle the sx.
So I made an inquiry in 2009 as to the possibilities moving forward. I had moved state, from Victoria to Tasmania and therefore would need to connect with another clinic. The original clinic sent me a few documents relating to tx history but the records were incomplete. However, there was enough to be helpful and give me the basics of where I was at during that 1995 98 period.
So the gastro commented at the end of the accompanying letter, that for treatment purposes moving forward, that I would be considered a relapser. The nurse who is managing me at the moment said she wouldn't consider me a relapser. From the perspective of achieving SVR, relapser is what I want to be... any thoughts ?