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
Deb for those of us with serious long term brain problems...can you put the stats back out? I know some people are smart enough to chart 4 week PCRS and stuff of other people - but I've never been that brilliant.
And the one question I have is - how early would you be thinking of stopping? If there is any way you could continue of course that would be the best solution but if you just CANT and you go as far as possible...maybe thats just better than nothing but only YOU really know the answer.
Personally, I know the research that I did for myself and what it equalled was me doing 72 weeks even though I really didn't want to. I had some drastic sides all throughout treatment BUT with my VL of 400 from week 4 thru 12 I had no choice but to continue to 72 or pretty much be guaranteed that the 48 weeks was for nothing. So I had no choice. But man I sure didn't wanna.....
And the one question I have is - how early would you be thinking of stopping? If there is any way you could continue of course that would be the best solution but if you just CANT and you go as far as possible...maybe thats just better than nothing but only YOU really know the answer.
Personally, I know the research that I did for myself and what it equalled was me doing 72 weeks even though I really didn't want to. I had some drastic sides all throughout treatment BUT with my VL of 400 from week 4 thru 12 I had no choice but to continue to 72 or pretty much be guaranteed that the 48 weeks was for nothing. So I had no choice. But man I sure didn't wanna.....
Stats:
Initial VL 2-1-07 43,200
VL 2-28-07 192
VL 3-24-07 4200
Week Two treatment: UND PCR <50
Week Eleven treatment: UND TMA <5
Week Eighteen treatment: UND PCR
Will have 24 week labs draw Friday (shot 25 that night)
I am thinking of starting to ask again at 28 weeks, depending.
Other important stats:
Regular blood donator until 2004.
Preoperative AST ALT Early november last year 14, 17
Surgery Nove 23 06
AST ALT in 700 and 800s Late January 07, acute illness, symptomatic with anorexia, fatigue, dark urine.
I've read what studies there are about acutes. No real US studies; some studies in europe and egypt about my type 4 geno, acute and treatment length show there's only a two percent diff. in SVR rates for my set of circumstances between 36 and 48.
Deb
Initial VL 2-1-07 43,200
VL 2-28-07 192
VL 3-24-07 4200
Week Two treatment: UND PCR <50
Week Eleven treatment: UND TMA <5
Week Eighteen treatment: UND PCR
Will have 24 week labs draw Friday (shot 25 that night)
I am thinking of starting to ask again at 28 weeks, depending.
Other important stats:
Regular blood donator until 2004.
Preoperative AST ALT Early november last year 14, 17
Surgery Nove 23 06
AST ALT in 700 and 800s Late January 07, acute illness, symptomatic with anorexia, fatigue, dark urine.
I've read what studies there are about acutes. No real US studies; some studies in europe and egypt about my type 4 geno, acute and treatment length show there's only a two percent diff. in SVR rates for my set of circumstances between 36 and 48.
Deb
I completely feel the same way you expressed. My doctor said he thought I should quit at the end of this month with only 12 weeks of tx. I'm genotype 2 and basically was undectable after the first 4 weeks. But, I've had to have 2 transfusions, and been in the hospital a total of 7 times because of my WBC mostly, altho RBC factored several times too.
Yes, I'd like to quit, but I'm afraid it could be too soon and I would "waste" all this trauma for the last 12 weeks and have to "do" this tx all over again. Because of the people on these forums I have been very proactive in my tx and even tho my doctor is worried about me continuing and he "feels" that given what he knows and getting advice from some experts (I think) he says I have an 80% chance of being SVR.
I have worked 9 hrs every day at my job except when I was in the hosp, however, because I need to feel clearer about stopping tx at 12 weeks, I took a 4 week STD (short term disability). I told my doctor to get all my "stuff" together send it to the experts at he Hep C clinic in Dallas and refer me so I can get more information to agree or disagree with him about stopping tx.
I definately want all the advantage I can get. I'm in complete awe of all the folks who have treated for several times and for many many weeks. I don't know how their strength holds up!
Anyway, I don't really know what to do either. I"ll be anxious to find out what you do. Good luck !
anniejo
Yes, I'd like to quit, but I'm afraid it could be too soon and I would "waste" all this trauma for the last 12 weeks and have to "do" this tx all over again. Because of the people on these forums I have been very proactive in my tx and even tho my doctor is worried about me continuing and he "feels" that given what he knows and getting advice from some experts (I think) he says I have an 80% chance of being SVR.
I have worked 9 hrs every day at my job except when I was in the hosp, however, because I need to feel clearer about stopping tx at 12 weeks, I took a 4 week STD (short term disability). I told my doctor to get all my "stuff" together send it to the experts at he Hep C clinic in Dallas and refer me so I can get more information to agree or disagree with him about stopping tx.
I definately want all the advantage I can get. I'm in complete awe of all the folks who have treated for several times and for many many weeks. I don't know how their strength holds up!
Anyway, I don't really know what to do either. I"ll be anxious to find out what you do. Good luck !
anniejo
Very difficult day losing someone in our virtual family so forgive any incoherence. It can be very disconcerting when one of the so-called experts does an about face regarding treatment issues, such as timing. It happened to me as well with another so-called expert. Hate to say it, but what it really comes down to is that they just don't know, and if you've done enough of your homework, you may know as much as they do, at least within the narrow confines of your individual case and treatment.
I would organize and bring in all the studies and questions you have, and ask him if you could sit together in his office -- as opposed to the treatment room -- to discuss your options. I did this once and it was an altogether different atmosphere with the nurses gone and my shirt on.
Then, say your say, listen to what he has to say, and come up with a plan. If you think he's placating you, simply ask him if he is. I have a feeling he's a pretty straight shooter.
Hope you get as much clarity from your visit as you are able and hope the studies and Dr. G. are on the side of a shorter treatment.
All the best,
-- Jim
I would organize and bring in all the studies and questions you have, and ask him if you could sit together in his office -- as opposed to the treatment room -- to discuss your options. I did this once and it was an altogether different atmosphere with the nurses gone and my shirt on.
Then, say your say, listen to what he has to say, and come up with a plan. If you think he's placating you, simply ask him if he is. I have a feeling he's a pretty straight shooter.
Hope you get as much clarity from your visit as you are able and hope the studies and Dr. G. are on the side of a shorter treatment.
All the best,
-- Jim
I think Jim nailed it when he said: "but what it really comes down to is that they just don't know...". I would guess that you are familiar with the same studies that he is as well as the studies that he has been associated with and, in the final analysis, shorter is better ONLY IF it works. We do know that your chances of achieving SVR are certainly not diminished if you treat longer and they are likely improved - it's the sides and what these drugs may do to you that argue against longer treatment. And no one knows that either in the majority of cases - how treatment will affect you in the long run. You place your bet and take your chances. There is no magic answer to this stuff for most of us. Good luck, Mike
Sorry for pokinging into your thread,
Just got back from the DR. decision to up Interferon to 150. We talked about adding Metformin for insulin resistance or upping Interferon. I said I didn't think I needed more side effects, I am to call her with decision tomorrow. She called and left a message Metformin and Tx combined doesn't look like an option. So I think upping the dose, original gut feleing is the best. Any ideas on NASH, my triglycerides are all good and have always been weel below limits. My Iron levels are always up. I do feel a need to tx this, but thus farnot much tx. out there. Any ideas of a NASH specialist.
Well thats it. Oh for backround info my
Original VL was 2 million IU / 10 million copies
4 week PCR = 397888*
8/15 Quanative Hep O RNA [ref range <1.9] 4.3 HF@
12 week = 19900
15 weeks 5000
Thanks In advance.
Teri
Just got back from the DR. decision to up Interferon to 150. We talked about adding Metformin for insulin resistance or upping Interferon. I said I didn't think I needed more side effects, I am to call her with decision tomorrow. She called and left a message Metformin and Tx combined doesn't look like an option. So I think upping the dose, original gut feleing is the best. Any ideas on NASH, my triglycerides are all good and have always been weel below limits. My Iron levels are always up. I do feel a need to tx this, but thus farnot much tx. out there. Any ideas of a NASH specialist.
Well thats it. Oh for backround info my
Original VL was 2 million IU / 10 million copies
4 week PCR = 397888*
8/15 Quanative Hep O RNA [ref range <1.9] 4.3 HF@
12 week = 19900
15 weeks 5000
Thanks In advance.
Teri
My Gish group guy, was flexible with the amount of time I did tx. He wanted 12 months initially. Then, 9 months after UND. I landed up doing 32 weeks and he felt fine with that. Be glad that Gish is flexible. And I would indeed e-mail him with all your sxs.
BTW: When I told my dr. that I couldn't do 12 months, he didn't ask why. He assumed it was because of sides. My reason was because the neupogen was driving me nuts!
I think statistically, we all are more likely to get SVR by doing longer tx. This looks good for the docs who can then use those numbers to their advantage, perhaps for further funding for thier research?
This doesn't mean they don't know their stuff, but there is more unknowns here than known.
I'd suggest asking Dr. Gish for the statistical differences, if you stop now or continue.
Good luck, I know these are tough decisions. OH
BTW: When I told my dr. that I couldn't do 12 months, he didn't ask why. He assumed it was because of sides. My reason was because the neupogen was driving me nuts!
I think statistically, we all are more likely to get SVR by doing longer tx. This looks good for the docs who can then use those numbers to their advantage, perhaps for further funding for thier research?
This doesn't mean they don't know their stuff, but there is more unknowns here than known.
I'd suggest asking Dr. Gish for the statistical differences, if you stop now or continue.
Good luck, I know these are tough decisions. OH
I am not aware of any contraindication for Metformin while on interferon/ribavirin. I believe that at one point I was taking that drug while treating but I'm not certain about that. Have you been diagnosed with NASH? I am not knowledgeable about NASH because that is one of the few diseases I haven't been afflicted with.
Evidence for a role of nonalcoholic steatohepatitis in hepatitis C: A prospective study.
Bedossa P, Moucari R, Chelbi E, Asselah T, Paradis V, Vidaud M, Cazals-Hatem D, Boyer N, Valla D, Marcellin P.
Service d'Anatomie Pathologique and CNRS UMR 8149, France.
Although steatosis is a common histological feature in chronic hepatitis C (CHC), nonalcoholic steatohepatitis (NASH) has not yet been clearly characterized in this context. The aim of this prospective study was to investigate the characteristics of patients with NASH and CHC. Biopsies were categorized as CHC alone (178 patients [57%]), CHC+steatosis (94 patients [34%]), or CHC+NASH (24 patients [9%]). Patients with CHC+NASH had significantly higher AST and triglyceride levels and lower high-density lipoprotein (HDL) cholesterol or total cholesterol than patients with CHC+steatosis. They also showed more steatosis and higher METAVIR fibrosis stage than patients with CHC+steatosis. Genotype 3 was more frequent in patients with CHC+NASH than in patients with CHC+steatosis or CHC alone. Patients with genotype 3 and CHC+NASH were similar to those with CHC+steatosis or with CHC alone according to triglyceride or the homeostasis model for assessment of insulin resistance (HOMA-IR), whereas in patients with genotype 1, HOMA-IR and triglyceride increased progressively from CHC alone to CHC+steatosis to CHC+NASH. In multivariate analysis, triglyceride and HDL cholesterol were predictors of NASH in patients with genotype 1, whereas in patients with genotype 3, AST was the only predictor. Conclusion: Patients with CHC+NASH differ significantly from those with CHC+steatosis and CHC alone in terms of biological and metabolic parameters and more advanced histopathological lesions. NASH is more common in genotype 3 and is not associated with metabolic dysfunctions in this subgroup, suggesting that NASH may complicate steatosis in CHC irrespective of etiology of steatosis. (HEPATOLOGY 2007.).
Also check out the Clinical Care Options website for additional information on NASH I'm sorry that I can not be of more help right now.
Mike
Evidence for a role of nonalcoholic steatohepatitis in hepatitis C: A prospective study.
Bedossa P, Moucari R, Chelbi E, Asselah T, Paradis V, Vidaud M, Cazals-Hatem D, Boyer N, Valla D, Marcellin P.
Service d'Anatomie Pathologique and CNRS UMR 8149, France.
Although steatosis is a common histological feature in chronic hepatitis C (CHC), nonalcoholic steatohepatitis (NASH) has not yet been clearly characterized in this context. The aim of this prospective study was to investigate the characteristics of patients with NASH and CHC. Biopsies were categorized as CHC alone (178 patients [57%]), CHC+steatosis (94 patients [34%]), or CHC+NASH (24 patients [9%]). Patients with CHC+NASH had significantly higher AST and triglyceride levels and lower high-density lipoprotein (HDL) cholesterol or total cholesterol than patients with CHC+steatosis. They also showed more steatosis and higher METAVIR fibrosis stage than patients with CHC+steatosis. Genotype 3 was more frequent in patients with CHC+NASH than in patients with CHC+steatosis or CHC alone. Patients with genotype 3 and CHC+NASH were similar to those with CHC+steatosis or with CHC alone according to triglyceride or the homeostasis model for assessment of insulin resistance (HOMA-IR), whereas in patients with genotype 1, HOMA-IR and triglyceride increased progressively from CHC alone to CHC+steatosis to CHC+NASH. In multivariate analysis, triglyceride and HDL cholesterol were predictors of NASH in patients with genotype 1, whereas in patients with genotype 3, AST was the only predictor. Conclusion: Patients with CHC+NASH differ significantly from those with CHC+steatosis and CHC alone in terms of biological and metabolic parameters and more advanced histopathological lesions. NASH is more common in genotype 3 and is not associated with metabolic dysfunctions in this subgroup, suggesting that NASH may complicate steatosis in CHC irrespective of etiology of steatosis. (HEPATOLOGY 2007.).
Also check out the Clinical Care Options website for additional information on NASH I'm sorry that I can not be of more help right now.
Mike
Not familiar with Metformin, nor how the increase in interferon relates to your weight. (More familiar with Pegasys, one-weight-for-all). That said, have you discussed upping the ribavirin with your doctor? A lot depends on how much riba you're on now, what you weigh, what was your hgb drop and how you feel. Also, if you've been given -- or would be given -- the helper drug Procrit. Is your doctor a liver specialist(hepatologist)? In general, they are the best to supervise treatment, but even much more so when you start to deviate (customize) from SOC. You want to do everything reasonable to get UND by week 24 or your chances of SVR are extremely low.
All the best,
-- Jim
All the best,
-- Jim
Thanks
I am geno 1 Biopsy states stage 3-4/4 grade 2/4. I also have NASH the biopsy states" LIVER PARENCHYMA with portal lymphotic aggregates, mild lobular inflamation and mild piecemeal necrosis. Moderate to severe steatosis, ballooning degeneration of hepatocytes and scattered hepatpcytes with glycogenated nuclei are noted
I am geno 1 Biopsy states stage 3-4/4 grade 2/4. I also have NASH the biopsy states" LIVER PARENCHYMA with portal lymphotic aggregates, mild lobular inflamation and mild piecemeal necrosis. Moderate to severe steatosis, ballooning degeneration of hepatocytes and scattered hepatpcytes with glycogenated nuclei are noted
Deb: I am a geno 4 wild type.
----------------------------------
I could tell by your profile picture.
----------------------------------
I could tell by your profile picture.
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
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
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
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
oops, misspoke. statement above should read "I don't know what it feels to have the virus except acutely".
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
perhaps next week would be better? I had three crapola weeks and this week has been goood.
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.
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
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.
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