Aa
Dr. Gish says maybe we can shorten treatment
Interesting development and quite surprising.
I was contacting Dr. Gish about studies for co-infected non-tx-naive sufferers yesterday for a friend of mine on the boards and he had one of his MDs do the research. They are not doing at CPMC, sad to say.
Also, at the same time, Dr. Gish asked me to keep in touch more oten, so I sent him an email with my current status, all details. I believe he and my internist had spoken regarding the delusions issue a couple of weeks ago. I also asked him if it would be possible to shorten treatment based on my acute illness, VL never greater than 42,000 and so on.
His response was to thank me for my update and also this
"we can definitely shorten treatment if your side effects continue.
Let us discuss q. four weeks"
I hate the treatment, although I'm not sure how to react to this. Is he giving me what i want? What is the algorithm here? Part of me is overjoyed and part of me is going...is this a side effect "give up"?
I hope ya'll don't mind me posting this today....it is a tough day on the board, but I wouldn't mind opinions, especially JMJM and his cohorts (wise experienced sages).
I'm so weird, i know.
Deb
I was contacting Dr. Gish about studies for co-infected non-tx-naive sufferers yesterday for a friend of mine on the boards and he had one of his MDs do the research. They are not doing at CPMC, sad to say.
Also, at the same time, Dr. Gish asked me to keep in touch more oten, so I sent him an email with my current status, all details. I believe he and my internist had spoken regarding the delusions issue a couple of weeks ago. I also asked him if it would be possible to shorten treatment based on my acute illness, VL never greater than 42,000 and so on.
His response was to thank me for my update and also this
"we can definitely shorten treatment if your side effects continue.
Let us discuss q. four weeks"
I hate the treatment, although I'm not sure how to react to this. Is he giving me what i want? What is the algorithm here? Part of me is overjoyed and part of me is going...is this a side effect "give up"?
I hope ya'll don't mind me posting this today....it is a tough day on the board, but I wouldn't mind opinions, especially JMJM and his cohorts (wise experienced sages).
I'm so weird, i know.
Deb
We do have a plan.
I quit smoking, not by thinking I would never smoke again, but by thinking I would not smoke today. So, well see where this goes using that technique. But I thank you and Deb for helping us put this together.
I quit smoking, not by thinking I would never smoke again, but by thinking I would not smoke today. So, well see where this goes using that technique. But I thank you and Deb for helping us put this together.
Hey, sounds like you guys got a plan going. Just to clarify, the Drusano study recommends a duration of 36 weeks PLUS the number of weeks you took to become UND. So, for example, if you find out you cleared by day 15 then you would go a total of 36 + 2 weeks.
I've been down this path for a while. It is VERY difficult to work with legal/hep c.
The health department has been involved and has investigated. They have a list of the patients who were in my operating room and my room at the hospital. They have investigated staff to see if any of them are infected. There are no reports of acute hepatitis C in that group, but that would be "self reported" hep c. This is not to say that none of those people do not have chronic hep c.They cannot compel those surgeons to test those patients.
The type of hep i have is rare, geno 4, wild type, which in my case means that the person i got it from has not been treated and thus the virus hasn't been mutated. There are very few patients in the US with this genotype that have been studied and not many exist.
The things in my favor are the fact that i was a regular blood donator as late as 2004, that I "almost" cleared on my own, that I had documented acute hep c illness and that my viral loads were always very very low. My other risk factors are nonexistent. Also in my favor is the fact that i was an VRVR (at two week labs). All this put together leads Gish to state that I got this when I did.
That's the only reason I have hope in making a case against the hospital. I've been through three lawyers to get to this one.
THe only reason i mentioned this is to give a clear picture of what this may be like if anyone is thinking of it.
Deb
The health department has been involved and has investigated. They have a list of the patients who were in my operating room and my room at the hospital. They have investigated staff to see if any of them are infected. There are no reports of acute hepatitis C in that group, but that would be "self reported" hep c. This is not to say that none of those people do not have chronic hep c.They cannot compel those surgeons to test those patients.
The type of hep i have is rare, geno 4, wild type, which in my case means that the person i got it from has not been treated and thus the virus hasn't been mutated. There are very few patients in the US with this genotype that have been studied and not many exist.
The things in my favor are the fact that i was a regular blood donator as late as 2004, that I "almost" cleared on my own, that I had documented acute hep c illness and that my viral loads were always very very low. My other risk factors are nonexistent. Also in my favor is the fact that i was an VRVR (at two week labs). All this put together leads Gish to state that I got this when I did.
That's the only reason I have hope in making a case against the hospital. I've been through three lawyers to get to this one.
THe only reason i mentioned this is to give a clear picture of what this may be like if anyone is thinking of it.
Deb
It looks like Eric and I are going to try and hang in until 36.
By the way, Gish sent me and my lawyer a note stating that there is a high probability that my infection was acquired at surgery along with some other stated "reasons" for it.
So, it's on. I'm going after the hospital where I got this.
Deb
By the way, Gish sent me and my lawyer a note stating that there is a high probability that my infection was acquired at surgery along with some other stated "reasons" for it.
So, it's on. I'm going after the hospital where I got this.
Deb
Great news. You can reach me: salorman2006 at
yahoo dot com
I had a typo when I created the id so make sure you type salorman as I did.
Eric
yahoo dot com
I had a typo when I created the id so make sure you type salorman as I did.
Eric
You guys - That's awesome! being on tx - to and for each other.
I'll try really hard to check in on youse everyday!
Meki
I'll try really hard to check in on youse everyday!
Meki
Deb
Is sure would!! Are you serious? I will do it.
Eric
Dointime: thanks for that information. Waiting until November is sounding like a great option.
Is sure would!! Are you serious? I will do it.
Eric
Dointime: thanks for that information. Waiting until November is sounding like a great option.
thanks, i felt helpless and thus my weak statement on downside.
eric, i'll try and hang in until 36 if you will...
deb
eric, i'll try and hang in until 36 if you will...
deb
The lack of data is crazy making for all the Prove people still treating who are desperate to stop the meds but equally desperate to get to SVR. Until that data is forthcoming, a compromise based on the Drusano study might suffice, ie. you go a duration of 36 weeks after becoming UND for a 90% chance of SVR. The Drusano study was based on SOC tx only but it's all the guide there is till we get more from the November conference.
Sorry to hear you are feeling so poorly. That VX is mean stuff.
dointime.
Sorry to hear you are feeling so poorly. That VX is mean stuff.
dointime.
that's the downside of trials and data.
Eric, if we wait until November together, will that help?
deb
Eric, if we wait until November together, will that help?
deb
I am glad to hear you are feeling better.
The data from the Vertex trials is confusing and there is no data for relapsers. That is what is making me crazy. There is every indication that I will have a very good chance of SVR if I stop at 24 weeks, but no data on the increase in probability if I treat for an additional 24 weeks.
If I wait until November there should be additional data presented at the liver conference.
The data from the Vertex trials is confusing and there is no data for relapsers. That is what is making me crazy. There is every indication that I will have a very good chance of SVR if I stop at 24 weeks, but no data on the increase in probability if I treat for an additional 24 weeks.
If I wait until November there should be additional data presented at the liver conference.
perhaps next week would be better? I had three crapola weeks and this week has been goood.
Good luck with your decision. I know how difficult this must be for you.
My sides have been pretty bad these days and it is making it difficult for me to write. I normally can just sit and type, but now I stare at the keyboard and can't say much.
Eric
My sides have been pretty bad these days and it is making it difficult for me to write. I normally can just sit and type, but now I stare at the keyboard and can't say much.
Eric
oops, misspoke. statement above should read "I don't know what it feels to have the virus except acutely".
Hi!
I have to agree, i don't think anyone knows.
The sides are signiicant, although this is a B12 week and I'm doing good. On the "off" weeks I can't get out of bed or eat. Lost 15 in the last month. But eating like a pig this week.
I do not feel different from the virus standpoint. The timeline is such that I was either getting surgery, getting over surgery, had acute hepatitis and then began treatment. So I really only had the virus from end of november until the second week in April. I don't know what it feels like to have the virus.
I know Gish won't risk my SVR, we talked a LOT yesterday because he is in town. He also committed in writing for my attorney, by the way, that this is acute, and has a "high probability" of being acquired in the hospital due to all the pertinent factors, my VLS and the trajectory of my labs pre and post and my fast response to treatment. So that's good news. My lawyer will be filing soon.
I think I will probably stop early but how early i do not know.
oxo
deb
I have to agree, i don't think anyone knows.
The sides are signiicant, although this is a B12 week and I'm doing good. On the "off" weeks I can't get out of bed or eat. Lost 15 in the last month. But eating like a pig this week.
I do not feel different from the virus standpoint. The timeline is such that I was either getting surgery, getting over surgery, had acute hepatitis and then began treatment. So I really only had the virus from end of november until the second week in April. I don't know what it feels like to have the virus.
I know Gish won't risk my SVR, we talked a LOT yesterday because he is in town. He also committed in writing for my attorney, by the way, that this is acute, and has a "high probability" of being acquired in the hospital due to all the pertinent factors, my VLS and the trajectory of my labs pre and post and my fast response to treatment. So that's good news. My lawyer will be filing soon.
I think I will probably stop early but how early i do not know.
oxo
deb
Knowing what I know now deb... I think... gawd, I hate to say this.
But I think you "might" be ok if you stopped at 28/30 - but monitored closely.
You responded faster than me - and I only did 24.
I don't think ANYONE knows.
We're all guinea pigs about this. Everyone responds so differently.
So that is why the "might"....
How are you feeling other than the sides? Do you feel different? I felt different around week 8.
I don't know how to explain different tho. It was like yeah I was sick from the sides... but something that had been with me was missing. Like a ghost rider had departed and was gone.
I don't have the words to describe it...
And I don't know if it is just me looking back at my TX - and trying to understand it.
Still - Deb - your wild type is even less known about than the others - so it's a shot in the dark no matter which way you go.
You'll have to decide with Gish --- and maybe you'll pick the right one for you.
Most importantly - listen to your body.
Hey - hugs to you sweetie --- I wish I could say informatively YES quit -- but I don't have the answer. I'm not sure anyone does.
Meki
But I think you "might" be ok if you stopped at 28/30 - but monitored closely.
You responded faster than me - and I only did 24.
I don't think ANYONE knows.
We're all guinea pigs about this. Everyone responds so differently.
So that is why the "might"....
How are you feeling other than the sides? Do you feel different? I felt different around week 8.
I don't know how to explain different tho. It was like yeah I was sick from the sides... but something that had been with me was missing. Like a ghost rider had departed and was gone.
I don't have the words to describe it...
And I don't know if it is just me looking back at my TX - and trying to understand it.
Still - Deb - your wild type is even less known about than the others - so it's a shot in the dark no matter which way you go.
You'll have to decide with Gish --- and maybe you'll pick the right one for you.
Most importantly - listen to your body.
Hey - hugs to you sweetie --- I wish I could say informatively YES quit -- but I don't have the answer. I'm not sure anyone does.
Meki
My internist and Gish are talking about that right now. Neither will make this a "gimme" if you know what I mean.
How are you doing, dear?
Deb
How are you doing, dear?
Deb
Beneficial Effects of Pentoxifylline on Hepatic Steatosis, Fibrosis and Necroinflammation in Patients With Non-alcoholic Steatohepatitis
Posted 07/09/2007 See: http://www.medscape.com/viewarticle/559029
How Should We Manage Patients With Non-alcoholic Fatty Liver Disease in 2007?
Posted 07/26/2007 See: http://www.medscape.com/viewarticle/559337
Current Concepts in the Pathogenesis of Nonalcoholic Fatty Liver Disease
Posted 05/24/2007 See: http://www.medscape.com/viewarticle/556987
I hope this helps. Mike
Posted 07/09/2007 See: http://www.medscape.com/viewarticle/559029
How Should We Manage Patients With Non-alcoholic Fatty Liver Disease in 2007?
Posted 07/26/2007 See: http://www.medscape.com/viewarticle/559337
Current Concepts in the Pathogenesis of Nonalcoholic Fatty Liver Disease
Posted 05/24/2007 See: http://www.medscape.com/viewarticle/556987
I hope this helps. Mike
Deb: I am a geno 4 wild type.
----------------------------------
I could tell by your profile picture.
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I could tell by your profile picture.
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