Aa
New guidlines in treating with soc in Sweden
Its gonna be official any day my doc told me today when I did my EOT visit.
They have finally come to the conclusion to follow Bergs, Shiffmans, Pearls and other top heaptologist suggestions to induviduvidualize treatment depending how rapid you answer instead of the old protocola which geno you are.
This is something some people here on forum has been suspecting for a couple of years and talking about.
Nygirl youvé been going on and on about geno 3 the "easy geno" that could not simple be the case you have said you have been so right you one smart chick sometimes, just wanted you to know that, also cocksparrow has suspected that what is most importent is the rapid answer rather than geno so has my ex zazza and others here on forum you can all be proud of your self lying ahead of many fine and skillid doctors LOL
In practic this means its gonna be easier for geno 3 and 2 to extend treatment if not und at 4 weeks and for geno 1 is gonna be easier to shorten tx if rapid response and also extend to 72 weeks if not und at 12 weeks.
Hope this and really believe this is not a single Swedish change but a worldwide aproach and since my doc participated in the meeting in San Fransisco recently its probably coming from there.
This will benefit us heppers we dont have to waste as much energi to advocat for ourselves in the future hopefully.
ca
They have finally come to the conclusion to follow Bergs, Shiffmans, Pearls and other top heaptologist suggestions to induviduvidualize treatment depending how rapid you answer instead of the old protocola which geno you are.
This is something some people here on forum has been suspecting for a couple of years and talking about.
Nygirl youvé been going on and on about geno 3 the "easy geno" that could not simple be the case you have said you have been so right you one smart chick sometimes, just wanted you to know that, also cocksparrow has suspected that what is most importent is the rapid answer rather than geno so has my ex zazza and others here on forum you can all be proud of your self lying ahead of many fine and skillid doctors LOL
In practic this means its gonna be easier for geno 3 and 2 to extend treatment if not und at 4 weeks and for geno 1 is gonna be easier to shorten tx if rapid response and also extend to 72 weeks if not und at 12 weeks.
Hope this and really believe this is not a single Swedish change but a worldwide aproach and since my doc participated in the meeting in San Fransisco recently its probably coming from there.
This will benefit us heppers we dont have to waste as much energi to advocat for ourselves in the future hopefully.
ca
yee haw...bout time....SOC timelines were draconian...it was unfair to 3's and to 1's.
especially sice the study showing all Super late responders SVR'd when treated out 60 wks past going UND. 100% clearance on them with enough tx changes the whole landscape and prove tx time matter more then early response....but getting a country to throw out the old paradigm and go with the new stats is major!!
mb
especially sice the study showing all Super late responders SVR'd when treated out 60 wks past going UND. 100% clearance on them with enough tx changes the whole landscape and prove tx time matter more then early response....but getting a country to throw out the old paradigm and go with the new stats is major!!
mb
PI RVRs will have (and are being) studied independently of SOC RVRs. My point simply was how d*mn long it took to "officialize" what many top docs have known for some time.
"The irony, is that by the time these policies going to common practice, SOC as we know it today will be a thing of the past as we enter the PI phase of treatment."
How good is it not that when we enter the PI phase of treatment, hopefully we know to individualize tx according to viral response, not to genotype, as not everybody will be RVR even with the PIs added. It will actually be even more important to treat the correct duration the first tx, since there is the resistance issue which will reduce our chances to retreat at least with the same kind of PIs.
How good is it not that when we enter the PI phase of treatment, hopefully we know to individualize tx according to viral response, not to genotype, as not everybody will be RVR even with the PIs added. It will actually be even more important to treat the correct duration the first tx, since there is the resistance issue which will reduce our chances to retreat at least with the same kind of PIs.
Kalio, Feb 9, 2007:
"I guess we learn that we are stronger than we realized.
Nice to see you, let's hope the days and weeks fly by!
When I started this whole thing I was told 6 months and my chance of clearing were excellent. Who would have thought that nearly 2 years later I'd still be at it!
I thought my doc wanted me to do the 48 weeks this time, but I misunderstood him, he wanted me to do 72 for the second course and "disregard" the first 6 months of treating..
Clearly he has never done treatment, any one of us can tell him "disregarding" 6 months on this stuff is the impossible dream!"
"I guess we learn that we are stronger than we realized.
Nice to see you, let's hope the days and weeks fly by!
When I started this whole thing I was told 6 months and my chance of clearing were excellent. Who would have thought that nearly 2 years later I'd still be at it!
I thought my doc wanted me to do the 48 weeks this time, but I misunderstood him, he wanted me to do 72 for the second course and "disregard" the first 6 months of treating..
Clearly he has never done treatment, any one of us can tell him "disregarding" 6 months on this stuff is the impossible dream!"
Can't trust my memory on this one, but I do seem to remember that Kalio stopped treatment, and then decided to retreat within a week or two. so that would not make it 72 weeks the second time, but 72 weeks total with perhaps a very short gap between the first 24 and the balance. But like Mike, I also seem to remember that she may have cut it short, although I do believe some tapering may been involved.
You were right. This is from HR shortly after Kalio reached SVR,
"She had extended treatment to 72 weeks after her rapid restart of treatment after initial relapse. Basically SOC meds. Special aspects: She added oxymatrine (felt reportedly much stronger after she started that) for the last 6month and she tapered off the IFN slowly at the end, no abrupt stopping. Never came around to add NTZ ( wanted to) , since her doc wont prescribe.
Had a precise fibroscan in fall of 06 that showed stage 3 fibrosis."
"She had extended treatment to 72 weeks after her rapid restart of treatment after initial relapse. Basically SOC meds. Special aspects: She added oxymatrine (felt reportedly much stronger after she started that) for the last 6month and she tapered off the IFN slowly at the end, no abrupt stopping. Never came around to add NTZ ( wanted to) , since her doc wont prescribe.
Had a precise fibroscan in fall of 06 that showed stage 3 fibrosis."
I believe Kalio did extend past 48 weeks but I am not certain it was 72 weeks. It may have been but, for some reason, I'm thinking more like 56 or 65 weeks. We'll find out soon.
Mike
Mike
first sentence should have read:
Three years ago I posted here that one of my hepatologists told me that viral response trumped all in terms of determining treatment length.
Three years ago I posted here that one of my hepatologists told me that viral response trumped all in terms of determining treatment length.
Three years ago I posted here that one of my hepatologists told me that viral response trumped all in terms of determining treatment response. To say I had my head handed to me, was an understatement LOL. I'm glad to see that at least Sweden is translating into a national policy the way many top hepatologist have been running their practices for years.
This no doubt will mean that fewer people will be undertreated or overtreated. So there will not only be more SVR's, but more intelligent SVR's.
The irony, is that by the time these policies going to common practice, SOC as we know it today will be a thing of the past as we enter the PI phase of treatment.
The lesson, if any, is to find the best hepatologist available --and/or add in your own independent research-- if you want the best and most intelligent treatment available in any point of time.
Jim
This no doubt will mean that fewer people will be undertreated or overtreated. So there will not only be more SVR's, but more intelligent SVR's.
The irony, is that by the time these policies going to common practice, SOC as we know it today will be a thing of the past as we enter the PI phase of treatment.
The lesson, if any, is to find the best hepatologist available --and/or add in your own independent research-- if you want the best and most intelligent treatment available in any point of time.
Jim
I have extended to 48 weeks this second time around, and with 1200 riba instead of 800 although 25lb lighter most of the time this time also had more interferon i think I have 94% chances of clearing this time I´ve done last riba today and if not clear its gonna be the new meds next time.
ca
ps I was in a study for geno 2, 3 relapsers
ca
ps I was in a study for geno 2, 3 relapsers
Yay!! This is great news!! I also got my extension to 48 weeks when my Doc got back from the SF meeting. Thank you for posting the info :))
As hard as it is CA you are a relapser and I want you to succeed this time. Extending is horrid (I know, I had too too) but it's all about winning the fight and not getting done as quickly as possible. Do whatever gives you the best odds, best chance to catch them all and best chance to train that immune system PERFECTLY! :)
Kalio was a g3 relapser and man she did everything to try and win the next time (SURE DID!!!!!!!!!!! YAY!). I hope she comes on to talk to you - I will try and email her and tell her to come on If I can get her. I'm pretty sure she did the 48 weeks the second time. No messing around, no whining, no self pity just "Let me do what I have to do", she wanted it BAD - just like you.
G3 looks to me like it can be EVERY bit as hard as a G1 sometimes.
I'm so sorry that you got the short end of the stick but you know I will be here to support you no matter what it takes. Even if it's just a "God I feel terrible" PM that you want to send...............you just send away and know I'll write you right back.
Kalio was a g3 relapser and man she did everything to try and win the next time (SURE DID!!!!!!!!!!! YAY!). I hope she comes on to talk to you - I will try and email her and tell her to come on If I can get her. I'm pretty sure she did the 48 weeks the second time. No messing around, no whining, no self pity just "Let me do what I have to do", she wanted it BAD - just like you.
G3 looks to me like it can be EVERY bit as hard as a G1 sometimes.
I'm so sorry that you got the short end of the stick but you know I will be here to support you no matter what it takes. Even if it's just a "God I feel terrible" PM that you want to send...............you just send away and know I'll write you right back.
Good info, Ny is right, Here is hoping the times passes quickly for you.
here in the states, My Heptologist and GI, have been saying this for awhile, that the new protocol should be based indvidually.
For this reason its extended for me, so much depends on how many treatments each person has had.
Like me CA you are relapser, You should be treated differently than a first time treater.
Now, I am not sure if here because of our insurance programs, they will follow this.
I DO HOPE they do.
From what I understood from my hep and gi, is first time treaters standard SOC, relapsers and folks with other health concerns, longer lower doses.
For us relpasers indvidual protocols.
Way to go CA and well said!
here in the states, My Heptologist and GI, have been saying this for awhile, that the new protocol should be based indvidually.
For this reason its extended for me, so much depends on how many treatments each person has had.
Like me CA you are relapser, You should be treated differently than a first time treater.
Now, I am not sure if here because of our insurance programs, they will follow this.
I DO HOPE they do.
From what I understood from my hep and gi, is first time treaters standard SOC, relapsers and folks with other health concerns, longer lower doses.
For us relpasers indvidual protocols.
Way to go CA and well said!
Thanks for posting this. Finally!
I now understand that my doctor had made a new treatment plan for me regarding my extention, when she got back from The Liver Meeting in SF. She told me that she will find out about how to extend there. She got back to me with the EVR + 24 week formula for geno 3. So maybe something happened at the meeting, which gave Swedes the last 'proof' that this is the right way to go.
I wonder, if Denmark is to follow, as the medical profession is working quite closely with each other.
I now understand that my doctor had made a new treatment plan for me regarding my extention, when she got back from The Liver Meeting in SF. She told me that she will find out about how to extend there. She got back to me with the EVR + 24 week formula for geno 3. So maybe something happened at the meeting, which gave Swedes the last 'proof' that this is the right way to go.
I wonder, if Denmark is to follow, as the medical profession is working quite closely with each other.
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