Aa
Treatment plan GT 3
I have finally worked out a tx plan for myself. This has emerged from daily research, since the beginning of April everybody's help I had here on our great forum and the answers I got from Dr. Dieterich. I hope that my doctors are gonna agree to it. I am not sure on the length of time I should predose Riba though, so any input on that would be greatly appreciated.
45 yrs old female, 57 kg, GT 3, VL 580.000, ALT 56, All other blood counts normal, Biopsy not done yet
1. Ribavirin 1000mg, predose for let's say 1 week ???
2. Pegasys 180mcg 1 x week
Ribavirin 1000mg / day
PCR at 2 weeks
PCR at 4 weeks
If RVR... do treatment for 24 weeks
PCR 8 weeks
PCR 12 weeks
If EVR ... extend treatment. Count 24 weeks from time of UND.
So how does that sound??
Marcia
45 yrs old female, 57 kg, GT 3, VL 580.000, ALT 56, All other blood counts normal, Biopsy not done yet
1. Ribavirin 1000mg, predose for let's say 1 week ???
2. Pegasys 180mcg 1 x week
Ribavirin 1000mg / day
PCR at 2 weeks
PCR at 4 weeks
If RVR... do treatment for 24 weeks
PCR 8 weeks
PCR 12 weeks
If EVR ... extend treatment. Count 24 weeks from time of UND.
So how does that sound??
Marcia
Yes, my GP explored all possibilities. The only thing he found wrong was that I tested positive for hep c. I'm pretty much confident that it is the hep c. It IS a virus and it doesn't astonish me that one can have these little temperatures sneak up.
I think that SVR is 90% in the pocket for g 3, if UND by week 4, even better if UND at week 2. One can even try to do 16 weeks with this one, but they advise that it is safer (in terms of SVR) to do 24 weeks, as the rate of relapse was 13% vs 5%.
We go to Mali every year and I have been to Timbuktu twice. I never even get as much as a bout of diarrhea there. Even living 20 years in Indonesia I might have had diarrhea only three times.
Am going back to the soccer game ... Netherlands vs Russia... They are playing a beautiful game....
Marcia
I think that SVR is 90% in the pocket for g 3, if UND by week 4, even better if UND at week 2. One can even try to do 16 weeks with this one, but they advise that it is safer (in terms of SVR) to do 24 weeks, as the rate of relapse was 13% vs 5%.
We go to Mali every year and I have been to Timbuktu twice. I never even get as much as a bout of diarrhea there. Even living 20 years in Indonesia I might have had diarrhea only three times.
Am going back to the soccer game ... Netherlands vs Russia... They are playing a beautiful game....
Marcia
Thought you liked all kinds of discussion! As to what "genes" you have, a two and four week PCR will give you a good heads up. Discuss some type of stop rule at week 4 with your hepatologist, as I believe the majority of geno 3's who SVR are UND by week 4, but I really know more about geno 1's. As to the fatigue and fevers that seem to have started at the end of February -- I'm sure you've explored the possiblity that they were caused by something picked up in your African Trek.
-- JIm
-- JIm
Even though I will not postpone treatment and I have made up my mind...
Jim, don't worry, I do in no way feel your pushing me at all. I love discussions, especially if they are about an important decision to take in life.
(I've only been to the US once, but my Dad was from Baltimore. I grew up in France, Germany and Indonesia and then moved to Denmark 10 yrs ago. I did not grow up speaking English at home, so that explains my lack of vocab etc. in the English language. I did go to an international high school in Jakarta for 3 years and graduated with an American High School Diploma.)
I have not seen studies referring to African American geno 3 in particular, let alone of mixed race. I just know that in general Afr. Am. have a lower success rate. They blame it on genetic factors. Logically I could have inherited either the genes of my mom or my dad regarding this aspect. Is there a dominant factor or a mix??? Who knows, I think this genetic stuff becomes too complicated.
And I really hope this fatigue will subside one day... I cannot spend the rest of my life chained to my bed... :-)
I refuse to think that I will stay this way. I didn't feel like this before the end of February. In the beginning of February I was still tracking in Mali and we made it all the way to Timbuktu and back, with our car breaking down in the middle of nowhere, changing tires and the whole thing. No AC in the car in the African heat and dust... I had the energy of a 20 year old. So maybe it will decide to bugger off after treatment, just as sudden as it came...
And the little fevers creeping up on me in the afternoons... I want them to go too.
Marcia
Jim, don't worry, I do in no way feel your pushing me at all. I love discussions, especially if they are about an important decision to take in life.
(I've only been to the US once, but my Dad was from Baltimore. I grew up in France, Germany and Indonesia and then moved to Denmark 10 yrs ago. I did not grow up speaking English at home, so that explains my lack of vocab etc. in the English language. I did go to an international high school in Jakarta for 3 years and graduated with an American High School Diploma.)
I have not seen studies referring to African American geno 3 in particular, let alone of mixed race. I just know that in general Afr. Am. have a lower success rate. They blame it on genetic factors. Logically I could have inherited either the genes of my mom or my dad regarding this aspect. Is there a dominant factor or a mix??? Who knows, I think this genetic stuff becomes too complicated.
And I really hope this fatigue will subside one day... I cannot spend the rest of my life chained to my bed... :-)
I refuse to think that I will stay this way. I didn't feel like this before the end of February. In the beginning of February I was still tracking in Mali and we made it all the way to Timbuktu and back, with our car breaking down in the middle of nowhere, changing tires and the whole thing. No AC in the car in the African heat and dust... I had the energy of a 20 year old. So maybe it will decide to bugger off after treatment, just as sudden as it came...
And the little fevers creeping up on me in the afternoons... I want them to go too.
Marcia
Beginning of third paragraph should have read:
I've seen the 1-% figure used a lot recently, but if it applies, it only applies to SOC. So even if true, any decline in SVR percentage on SOC would potentially be more than made up for in spades, if one for example waited and then treated with a newer PI combo showing significantly better results than SOC.
I've seen the 1-% figure used a lot recently, but if it applies, it only applies to SOC. So even if true, any decline in SVR percentage on SOC would potentially be more than made up for in spades, if one for example waited and then treated with a newer PI combo showing significantly better results than SOC.
Yes, you've obviously given this lots of thought, and no one can argue with reasons #4, #6 and #7, which are very personal and very important.
A few comments on some of the others, not to change your mind, but just as points of information/opinion.
I've seen the 1-% figure used a lot recently, but if it applies, it only applies to SOC. So even if true, any decline in SVR percentage on SOC would potentially be more than made up for in spades. As for the fatigue, while some report less fatigue after SVR, at least an equal group report more fatigue. Many report about the same fatigue levels as pre-treatment, which is my experience. Fatigue is one of the most common complaints doctors hear, and while its def appears to be associated with HCV, it's also associated with so many other things that have nothing to do with HCV. Didn't realize you were half African American. Have you researched what Geno 3 SVR rates are for African Americans and what they might be for someone half Afro American, although the latter might be part guesswork. At least with geno 1's, SVR rates for African Americans is not the same as for Caucasians or Asians.
Hopefully you don't feel I'm trying to push you in a particular direction -- even though I do have a bias to wait if little damage -- but since you're obiously a thinker/information gatherer, I felt you might appreciate any and all info.
All the best,
-- Jim
A few comments on some of the others, not to change your mind, but just as points of information/opinion.
I've seen the 1-% figure used a lot recently, but if it applies, it only applies to SOC. So even if true, any decline in SVR percentage on SOC would potentially be more than made up for in spades. As for the fatigue, while some report less fatigue after SVR, at least an equal group report more fatigue. Many report about the same fatigue levels as pre-treatment, which is my experience. Fatigue is one of the most common complaints doctors hear, and while its def appears to be associated with HCV, it's also associated with so many other things that have nothing to do with HCV. Didn't realize you were half African American. Have you researched what Geno 3 SVR rates are for African Americans and what they might be for someone half Afro American, although the latter might be part guesswork. At least with geno 1's, SVR rates for African Americans is not the same as for Caucasians or Asians.
Hopefully you don't feel I'm trying to push you in a particular direction -- even though I do have a bias to wait if little damage -- but since you're obiously a thinker/information gatherer, I felt you might appreciate any and all info.
All the best,
-- Jim
Thank you so much... I hope you are doing well these days and that tx is treating you well.
God bless,
Your Swedish friend Marcia
God bless,
Your Swedish friend Marcia
Got a good feeling for your treating approach good luck.
And may the good God bless you ever so much.
Your Swedish friend!
ca
ps also belive strongly in following intuition.
And may the good God bless you ever so much.
Your Swedish friend!
ca
ps also belive strongly in following intuition.
I am not taking it wrong and thank you for pointing that out to me. It is always good to get all kinds of input. And I appreciate all the advice I can get.
Yes, I have turned this around in my head again and again and I have also discussed it with my husband and children. And yes, my mind is set, regardless of liver damage. Unless of course the biopsy comes back so bad, that I am not allowed to treat. But I doubt that this is the case, as two ultrasound scans indicated no abnormalities at all.
Even though I so far have only seen one hepatologist and not the viral hepatologist, who is going to treat me... and have not had a biopsy, yet. (at the hospital they suggest treating, even without a biopsy. The Danes routinely go ahead treating geno 2 and 3, as they expect high success rates. Of course providing the person is fit and able to treat)
I have been weighing out the facts. I will name them below
1. I have had this for around 25 years, so even if I haven't had a biopsy, I know the disease progresses.
2. With every year I wait, I will have about 1-2% less chance to SVR (this wil maybe change with the new drugs)
3. I have been suffering of chronic fatigue and some other symptoms everyday for almost 4 months now. That really is not a good quality of life. I do not want to drag myself around like this for the next 2 years waiting for Telaprevir or something else.
4. This is a good time in my life to treat. We had been planning to move from Denmark soon, partially to West Africa. So we are stalling our plans for the moment, as I definitely prefer treating here.
5. According to studies the
best candidate for SVR is : female, under 40, Caucasian
least good canditate for SVR: male , over 40 , African American
I am female, over 40 , Caucasian / African American
So it puts me somewhere in between, as I don't know which genes I have inherited.
6. I really want to get rid of this virus as soon as possible.
7. I listen very much to my intuition, and it feels right to go ahead and do it now.
God bless,
Marcia
Yes, I have turned this around in my head again and again and I have also discussed it with my husband and children. And yes, my mind is set, regardless of liver damage. Unless of course the biopsy comes back so bad, that I am not allowed to treat. But I doubt that this is the case, as two ultrasound scans indicated no abnormalities at all.
Even though I so far have only seen one hepatologist and not the viral hepatologist, who is going to treat me... and have not had a biopsy, yet. (at the hospital they suggest treating, even without a biopsy. The Danes routinely go ahead treating geno 2 and 3, as they expect high success rates. Of course providing the person is fit and able to treat)
I have been weighing out the facts. I will name them below
1. I have had this for around 25 years, so even if I haven't had a biopsy, I know the disease progresses.
2. With every year I wait, I will have about 1-2% less chance to SVR (this wil maybe change with the new drugs)
3. I have been suffering of chronic fatigue and some other symptoms everyday for almost 4 months now. That really is not a good quality of life. I do not want to drag myself around like this for the next 2 years waiting for Telaprevir or something else.
4. This is a good time in my life to treat. We had been planning to move from Denmark soon, partially to West Africa. So we are stalling our plans for the moment, as I definitely prefer treating here.
5. According to studies the
best candidate for SVR is : female, under 40, Caucasian
least good canditate for SVR: male , over 40 , African American
I am female, over 40 , Caucasian / African American
So it puts me somewhere in between, as I don't know which genes I have inherited.
6. I really want to get rid of this virus as soon as possible.
7. I listen very much to my intuition, and it feels right to go ahead and do it now.
God bless,
Marcia
FWIW NYGirl and I have gone at it even worse, but hopefully we still have respect for each other, I certainly do for her. I'm sure she's more than OK with the way you responded but she rarely posts on weekends so probably hasn't seen much of this. Just so you know, given what preceded it, I don't fault your initial post at all and might have done similar in the past -- just that sometimes things get out of hand when you're not face to face and things start snowballing.
Be well,
-- Jim
Be well,
-- Jim
Thank you for your concern and well wishing.
I do NOT intend to use Alinia. I did not know about it, until this thread.
My concern is a treatment tailored to me and my genotype, with Pegasys and Copegus.
The SOC for genotype 3 has been mixed into the same pot as genotype 2 and in the last few years the medical profession is becoming more and more aware of, that they should take a different approach to treating geno 3.
I have read that some suggest to predose and heighten the riba dose.
Taking this in consideration, I asked Dr. Dieterich, MD, an expert in HCV, who is a Professor at Mt. Sinai, how he would treat me.
He suggested Pegasys 180mcg and 1000mg Riba.
He also stated "There is no data yet on predosing with RBV, but I am getting more convinced of it and would do it myself if I had to start again."
He is speaking out of experience of treating patients and having been an HCV patient himself.
So I think that it is sound advise he gave me and I will ask my hepatologist what she thinks about this. In the end it will still be my doctor's decision, how she is comfortable treating me.
Best wishes,
Marcia
I do NOT intend to use Alinia. I did not know about it, until this thread.
My concern is a treatment tailored to me and my genotype, with Pegasys and Copegus.
The SOC for genotype 3 has been mixed into the same pot as genotype 2 and in the last few years the medical profession is becoming more and more aware of, that they should take a different approach to treating geno 3.
I have read that some suggest to predose and heighten the riba dose.
Taking this in consideration, I asked Dr. Dieterich, MD, an expert in HCV, who is a Professor at Mt. Sinai, how he would treat me.
He suggested Pegasys 180mcg and 1000mg Riba.
He also stated "There is no data yet on predosing with RBV, but I am getting more convinced of it and would do it myself if I had to start again."
He is speaking out of experience of treating patients and having been an HCV patient himself.
So I think that it is sound advise he gave me and I will ask my hepatologist what she thinks about this. In the end it will still be my doctor's decision, how she is comfortable treating me.
Best wishes,
Marcia
I don't have anythiing, but respect for nygirl. I've said that before as she is one of my hero's, still. I just think she acted inappropriately, whether she is ok with the way she responded is yet to be seen. Oh yes and I did apologize to her as I re-read my question, I could easily see that I pushed her buttons. For that, I apoligized. Anyways, I am moving onward and my hope is that everyone else will do likewise. As always, God Bless.
As often happens in written communication on the internet, communication doesn't always communicate. While I understand what Fret wrote in response to what NYGirl initially said, I don't think that's what she meant, i.e. that people should die treating rather than reduce riba. Let's be fair. So Fret's response was a bit of an overstatement that obviously pushed some buttons. I'm sure the two of them will work this out as they both seem like nice folks. My own views fall somewhere inbetween on dose reduction and certainly the counsel of an experienced hepatologist is of critical importance, who not only will take into account the total medical history but hopefully how much liver damage the person has -- i.e. the more damage the harder one might reasonable fight.
Marcia, back to your questions -- again I admire all your research and questions on treatment and please don't take this the wrong way -- but have you spent the same amount of time researching whether or not you should treat in the first place with the current drugs?
I understand you haven't seen a hepatologist yet, not had a biopsy, but from the tenor of your questions it almost seems that your mind is made up to treat, regardless of liver damage or lack of liver damage. That's fine as long as you've spent some time weighing the relative merits of treating versus not with the current drugs. As you know, there's some potentially very exciting stuff in the pipeline -- Telaprevir for example -- that may make a lot of sense for those that have time to wait.
All the best,
-- Jim
Marcia, back to your questions -- again I admire all your research and questions on treatment and please don't take this the wrong way -- but have you spent the same amount of time researching whether or not you should treat in the first place with the current drugs?
I understand you haven't seen a hepatologist yet, not had a biopsy, but from the tenor of your questions it almost seems that your mind is made up to treat, regardless of liver damage or lack of liver damage. That's fine as long as you've spent some time weighing the relative merits of treating versus not with the current drugs. As you know, there's some potentially very exciting stuff in the pipeline -- Telaprevir for example -- that may make a lot of sense for those that have time to wait.
All the best,
-- Jim
Is there a reason to believe you will have a problem with riba absorption? Going off-label may not be the best route for the tx-naive. Besides skewing your test results down the line in comparison to studies and others' results, we really don't 100% understand the workings of riba. We know it's an RNA mutagen. Do you want to create new and exotic quasi-species with no IFN around to finish them off? FLGuy, NYGirl, cruelworld, and others had reasons for going off-label - previous failed tx or slow response. There are good reasons why these drugs are dosed at the levels they are and we are still learning what the long term effects of SOC really are.
Good luck.
Good luck.
Thanks so much for the sound advice. I think I will follow it, except for.... expect the best....
I am more the type of person to go for .... Hope for the best, but expect the worst, and you will be extremely happy if it isn't that bad after all. :-)
Marcia
I am more the type of person to go for .... Hope for the best, but expect the worst, and you will be extremely happy if it isn't that bad after all. :-)
Marcia
And ... sigh .. I want to say that I was in the wrong to expect anything of other people, to speak up in any regard. I have the right to my own opinion and I must follow my own conscience and I respect the right of others to do the same for their own reasons ...and my expectations were off, in this regard.
I have said what I felt I MUST say and moving on.
Eric...thanks for posting that. This was not meant to be a personal issue.
Trish
I have said what I felt I MUST say and moving on.
Eric...thanks for posting that. This was not meant to be a personal issue.
Trish
I wish you all the best. I certainly want you to clear on your first and only try. You've done your research well and I can see that you are going into this with a well educated mind. Expect the best, be prepared for waiting for results and not surprised by the unexpected. That's the best that I can offer you from my personal experience with this whole TX world.
Susan400
Susan400
I am not posting to defend NYGIRL, but to say that I know her personally and she is a fine, caring person.
Again, this is not a defense of being nasty, just a description of a complete person that perhaps was too aggressive in this instance for reasons known only to her and maybe not even known to her.
Eric
Again, this is not a defense of being nasty, just a description of a complete person that perhaps was too aggressive in this instance for reasons known only to her and maybe not even known to her.
Eric
Before you come on here and stick up for what nygirl said, keep this in mind as it was posted by Trish. My point is, it was wrong and if you're gonna defend it, be sure you know what you're saying. In my own defense about my opinion, I said it, I meant it and I'm here to represent it!! What's more important as well is what Marcia intends to do, so if you totally support nygirl, go ahead. At first ppl just stayed out of it, maybe that would be the best choice.
"And to watch the post defended and thanked".
"Really...the tone of the posts in the last couple of days, regardless of what people think of the person is a little much to take".
"And to watch people not only let this stand ... but to defend it .. really. Also a little much to take". God Bless
"And to watch the post defended and thanked".
"Really...the tone of the posts in the last couple of days, regardless of what people think of the person is a little much to take".
"And to watch people not only let this stand ... but to defend it .. really. Also a little much to take". God Bless
This should be said directly to you. My issue is with how you said what you said and then I have concerns about some of what you said.
I have a great deal of respect for what you have accomplished with your 72 weeks of treatment and everything you've gone through. I've said as much to you publicly and privately. I think you post very valuable information and I happen to think you're one of the most valuable people here... for the ongoing support you give and for you sharing your experiences with people that help them get through treatment better.
The things you said in your post in this thread .. if fret hadn't asked you that question in his way, I would have put it to you in my own way myself.
To your comment: "DO NOT DOSE REDUCE. go with one and stay with it for the duration.............no matter what. Take the Procrit if you need it but don't think about reducing."
No matter what? Are you kidding me? That is one of the most irresponsible pieces of advice I have ever read on these boards. Frankly I was alarmed. It wouldn't take long to scan through posts on a daily basis to find people struggling with dosage reduction decisions in light of their overall health pictures. And you have only ONE thing to say to that "do not dose reduce ... no matter what". Fret's question was entirely apropos frankly ... really he's asking to what extremes do you take such advice? Right to the grave, Deb? And if not... then please do NOT say things like "do not dose reduce .. no matter what". Qualify it .. with "unless your health is at risk in other ways". But you did NOT say that. And frankly, I think his questions was justified and rightly incredulous in it's nature.
By your advice, there are NO exceptions. And that's just bloody dangerous to me to be putting out advice like that. I think what you did was phenomenal and you are incredibly resilient. However, your treatment experience is not the same as any number of people that I could count off who have posted in the last week who are struggling with dosage reduction or stoppage in view of their health situation. (I do not count me as one of them...am dealing with it but do NOT have the health issues the ones I'm thinking of do.)
Then your next comment: "Considering there are plenty enough of us in here who've had much much more dramatic hemo reductions and anemia than the normal person is EVER likely to NEARLY experience - I will tell you this one thing........how hard you fight for the SVR is a big part of whether or not you get it at all. It is a TRICKY thing to attain - and taking the easy way out usually makes it perfectly clear that it will not happen. "
Every. Time. I. Read. That. I. See. Red.
Taking the easy way out??? You think that people taking a dosage reduction.....are taking the easy way out??? Who the F*** are you ... to be making such a judgment on people in those situations is what I want to say to you. Every, frigging, week .. there are posts from people who DESPERATELY want to achieve SVR and are agonizing, absolutely agonizing over a decision on whether to reduce their dosages to prevent harm in other ways to their health .. they find themselves with other health complications that MUST be taken into account over the course of their treatment. HCV is NOT the only disease or health situation that impacts quality of life, Deb. What hell good is it to cure yourself of HCV and be left worse off than you were before? That is NOT your call to make, Deb. And to infer that it is taking the easy way out to dosage reduce when someone is considering their overall health picture makes me so incredibly angry.
I'm a big advocate of shock and awe...hit it hard and keep at it as long as you can. I'm totally with you there, Deb. Totally. And to do everything you can to avoid a dosage reduction, to tough out your treatment in whatever way possible....yep...I'm with you there. But a blind devotion to the dosage is just bloody reckless and foolish to the exclusion of everything else that may be going on with a person.
Frankly ... I think people who opt for dosage reduction are bloody brave. They have made a decision to risk their SVR outcome for their overall health picture and that is NOT an "easy way out" decision. Every frigging day I see someone on here struggling with that....and they need our support in making the decision they feel is RIGHT for them. They have a really tough choice to make, one which I keep escaping week after week after week, because I am in a trial with it's parameters more than because my situation is precarious compared to others. I only have a very wee taste of what that is like to have to struggle with that decision. And I have a great deal of compassion and respect for those who are going through that.
So maybe you can clarify .. under what circumstances DO you consider dosage reduction acceptable, Deb? I didn't see any. And in light of that, I think fret's question made perfect sense and I would have and am asking you the same myself.
As for WHAT you said to fret and HOW you said it.....whewwwwwwwwwwwwww. It sure upset me ... stated my opinion on that and I'll leave it.
Anyway. I take exception to THIS post and the point of view stated in THIS post.
NOT to you as a person or to your overall contributions here. You are an amazing woman and have so much to offer here and have helped very many people. You are one of the stars here, to me. You are a combo kid who made the big time.. SVR. And I continue to have a great deal of respect for you. (Not that it matters what *I* think....I simply wanted to make clear where I'm at overall.)
I just really really really could not in good conscience let statements such as "do not dose reduce .. no matter what" and "taking the easy way out" go unchallenged because I DO think that is a very harmful point of view.
I'm too wordy .. as always...just could not find a way to wrap all my emotions up in a ball of words.
Trish
I have a great deal of respect for what you have accomplished with your 72 weeks of treatment and everything you've gone through. I've said as much to you publicly and privately. I think you post very valuable information and I happen to think you're one of the most valuable people here... for the ongoing support you give and for you sharing your experiences with people that help them get through treatment better.
The things you said in your post in this thread .. if fret hadn't asked you that question in his way, I would have put it to you in my own way myself.
To your comment: "DO NOT DOSE REDUCE. go with one and stay with it for the duration.............no matter what. Take the Procrit if you need it but don't think about reducing."
No matter what? Are you kidding me? That is one of the most irresponsible pieces of advice I have ever read on these boards. Frankly I was alarmed. It wouldn't take long to scan through posts on a daily basis to find people struggling with dosage reduction decisions in light of their overall health pictures. And you have only ONE thing to say to that "do not dose reduce ... no matter what". Fret's question was entirely apropos frankly ... really he's asking to what extremes do you take such advice? Right to the grave, Deb? And if not... then please do NOT say things like "do not dose reduce .. no matter what". Qualify it .. with "unless your health is at risk in other ways". But you did NOT say that. And frankly, I think his questions was justified and rightly incredulous in it's nature.
By your advice, there are NO exceptions. And that's just bloody dangerous to me to be putting out advice like that. I think what you did was phenomenal and you are incredibly resilient. However, your treatment experience is not the same as any number of people that I could count off who have posted in the last week who are struggling with dosage reduction or stoppage in view of their health situation. (I do not count me as one of them...am dealing with it but do NOT have the health issues the ones I'm thinking of do.)
Then your next comment: "Considering there are plenty enough of us in here who've had much much more dramatic hemo reductions and anemia than the normal person is EVER likely to NEARLY experience - I will tell you this one thing........how hard you fight for the SVR is a big part of whether or not you get it at all. It is a TRICKY thing to attain - and taking the easy way out usually makes it perfectly clear that it will not happen. "
Every. Time. I. Read. That. I. See. Red.
Taking the easy way out??? You think that people taking a dosage reduction.....are taking the easy way out??? Who the F*** are you ... to be making such a judgment on people in those situations is what I want to say to you. Every, frigging, week .. there are posts from people who DESPERATELY want to achieve SVR and are agonizing, absolutely agonizing over a decision on whether to reduce their dosages to prevent harm in other ways to their health .. they find themselves with other health complications that MUST be taken into account over the course of their treatment. HCV is NOT the only disease or health situation that impacts quality of life, Deb. What hell good is it to cure yourself of HCV and be left worse off than you were before? That is NOT your call to make, Deb. And to infer that it is taking the easy way out to dosage reduce when someone is considering their overall health picture makes me so incredibly angry.
I'm a big advocate of shock and awe...hit it hard and keep at it as long as you can. I'm totally with you there, Deb. Totally. And to do everything you can to avoid a dosage reduction, to tough out your treatment in whatever way possible....yep...I'm with you there. But a blind devotion to the dosage is just bloody reckless and foolish to the exclusion of everything else that may be going on with a person.
Frankly ... I think people who opt for dosage reduction are bloody brave. They have made a decision to risk their SVR outcome for their overall health picture and that is NOT an "easy way out" decision. Every frigging day I see someone on here struggling with that....and they need our support in making the decision they feel is RIGHT for them. They have a really tough choice to make, one which I keep escaping week after week after week, because I am in a trial with it's parameters more than because my situation is precarious compared to others. I only have a very wee taste of what that is like to have to struggle with that decision. And I have a great deal of compassion and respect for those who are going through that.
So maybe you can clarify .. under what circumstances DO you consider dosage reduction acceptable, Deb? I didn't see any. And in light of that, I think fret's question made perfect sense and I would have and am asking you the same myself.
As for WHAT you said to fret and HOW you said it.....whewwwwwwwwwwwwww. It sure upset me ... stated my opinion on that and I'll leave it.
Anyway. I take exception to THIS post and the point of view stated in THIS post.
NOT to you as a person or to your overall contributions here. You are an amazing woman and have so much to offer here and have helped very many people. You are one of the stars here, to me. You are a combo kid who made the big time.. SVR. And I continue to have a great deal of respect for you. (Not that it matters what *I* think....I simply wanted to make clear where I'm at overall.)
I just really really really could not in good conscience let statements such as "do not dose reduce .. no matter what" and "taking the easy way out" go unchallenged because I DO think that is a very harmful point of view.
I'm too wordy .. as always...just could not find a way to wrap all my emotions up in a ball of words.
Trish
Do you agree with her approach to say things that are unacceptable and calling ppl names? I find that hard to believe, there were and are gonna ppl who have varing opinions, should we all resort to shock some sense into them?
NYG: "Please..........be a grown up when posting a question there is just no need to be a complete imbecile and make stupid sarcastic remarks like that. Nobody said anything about having somebody dying - that's just plain straight out moronic to even suggest such a thing".
Well Trinity, your point is well taken and if you want to stand by your friend and just write it off as shocking some sense into ppl then that's your right. My point is the tx is so highly individualistic and unpredectible that you can not make an across the board prognosis for anyone, case in point.
"Ask people like Mr. Beagle Bailey who STARTED treatment with thalessemia and severe anemia. BEFORE the riba and he did transfusion after tranfusion and procrit and epo and did ever single thing he could Not to dos reduce and Still did not attain SVR".
Unfortunately even the case she referenced could have gone either way and proves my opinion that tx is individualistic and highly unpredictable. Yes he stuck it out and unfortunately still didn't reach SVR. That's a shame, but to me I still have the same opinion. I will continue learning, but when someone comes out and attacks somebody else on this forum just b/c they have a different opinion, that's totally uncalled for. If it's so right on, then my feeling is she would come back on here and re-itterate what she said and back it up. It doesn't matter how many friends come on here to back her up, the bottom line is she needs to check herself before she wrecks herself.
This is what Trish had to say about it: "That was one of the most vitriolic unfair attack posts I have ever seen, nevermind putting out a very harmful point of view... at a person who never has an unkind thing to say about anyone and has been on an earnest journey to get his questions answered and to help other people along the way".
Good luck to you Trinity4. God Bless
NYG: "Please..........be a grown up when posting a question there is just no need to be a complete imbecile and make stupid sarcastic remarks like that. Nobody said anything about having somebody dying - that's just plain straight out moronic to even suggest such a thing".
Well Trinity, your point is well taken and if you want to stand by your friend and just write it off as shocking some sense into ppl then that's your right. My point is the tx is so highly individualistic and unpredectible that you can not make an across the board prognosis for anyone, case in point.
"Ask people like Mr. Beagle Bailey who STARTED treatment with thalessemia and severe anemia. BEFORE the riba and he did transfusion after tranfusion and procrit and epo and did ever single thing he could Not to dos reduce and Still did not attain SVR".
Unfortunately even the case she referenced could have gone either way and proves my opinion that tx is individualistic and highly unpredictable. Yes he stuck it out and unfortunately still didn't reach SVR. That's a shame, but to me I still have the same opinion. I will continue learning, but when someone comes out and attacks somebody else on this forum just b/c they have a different opinion, that's totally uncalled for. If it's so right on, then my feeling is she would come back on here and re-itterate what she said and back it up. It doesn't matter how many friends come on here to back her up, the bottom line is she needs to check herself before she wrecks herself.
This is what Trish had to say about it: "That was one of the most vitriolic unfair attack posts I have ever seen, nevermind putting out a very harmful point of view... at a person who never has an unkind thing to say about anyone and has been on an earnest journey to get his questions answered and to help other people along the way".
Good luck to you Trinity4. God Bless
Thank you Hector,
Unfortunately until this date, there have not been enough individual studies of geno 3.
I read through the very interesting discussion, but kind of got hung up on that it is mostly speaking of geno 2 and 3... and there is not much separation between them. Fair enough, here and again they are pointing out, that 3's are not as easy to treat as 2's.
'Finally, some of the variables that may affect response include the difference between genotype 2 versus genotype 3; the presence of hepatic fibrosis or cirrhosis; and viral load.'
and
'Although broad recommendations are important, it is clear that genotype 3 patients do not respond as well as genotype 2 patients; there is a higher relapse rate in genotype 3 patients. Even among genotype 3 patients, those who have more steatosis, a
higher viral load, or more advanced fibrosis, are more likely to relapse.'
So for me that points more to taking Dr. Dieterich's advice to use 1000mg (if my docs agree and I can take it) and predose. I would like to be a step ahead, so I can 'match up' with the 2's.
Marcia
Unfortunately until this date, there have not been enough individual studies of geno 3.
I read through the very interesting discussion, but kind of got hung up on that it is mostly speaking of geno 2 and 3... and there is not much separation between them. Fair enough, here and again they are pointing out, that 3's are not as easy to treat as 2's.
'Finally, some of the variables that may affect response include the difference between genotype 2 versus genotype 3; the presence of hepatic fibrosis or cirrhosis; and viral load.'
and
'Although broad recommendations are important, it is clear that genotype 3 patients do not respond as well as genotype 2 patients; there is a higher relapse rate in genotype 3 patients. Even among genotype 3 patients, those who have more steatosis, a
higher viral load, or more advanced fibrosis, are more likely to relapse.'
So for me that points more to taking Dr. Dieterich's advice to use 1000mg (if my docs agree and I can take it) and predose. I would like to be a step ahead, so I can 'match up' with the 2's.
Marcia
No worries, pal. I've always thought very highly of NYgirl, so I'm not trying to prolong anything here, in fact the sooner this is taken care of the better. If she was having a bad day or something, I can totally understand as I've had to apologize to people before for similiar behavior. With that said, to drop down to verbally beating somebody up, whether it's me or someone else, that is unacceptable on any level. Now I gotta get some sleep, later friend. God Bless
fret,
You don't know yet what it's all about. Yes, you've done a lot of reasearch and you have educated yourself but there is no step by step manual to read when you start tx. I don't care how much you think you know and how much you think you are prepared, it will kick you in the butt!!! You will learn, and you will have opinions as well. By your postings it doesn't seem you are hesitant to give an opinion either and sometimes things are just better left alone. PERIOD. Sorry, but I agree with NYGirl in her approach to shock some sense into people sometimes. I PM'd her yesterday and I've about had it with the bull so I'm going to have to take a break and just chill. I can't be objective anymore!!! That's my opinion, and I'm sticking to it!
Trinity
Trinity
You don't know yet what it's all about. Yes, you've done a lot of reasearch and you have educated yourself but there is no step by step manual to read when you start tx. I don't care how much you think you know and how much you think you are prepared, it will kick you in the butt!!! You will learn, and you will have opinions as well. By your postings it doesn't seem you are hesitant to give an opinion either and sometimes things are just better left alone. PERIOD. Sorry, but I agree with NYGirl in her approach to shock some sense into people sometimes. I PM'd her yesterday and I've about had it with the bull so I'm going to have to take a break and just chill. I can't be objective anymore!!! That's my opinion, and I'm sticking to it!
Trinity
Trinity
Yeah being polite appering to be wise and well phrased.
Thats whats live really is about isn`t it?
Just learn to be that and it can take you to treamendous succes and popularity in this world.
Honesty is secondary can even but you in risk of being disqualifyed.
Nygirl are in my opinion one of the must purehearted straight up people.
i´d ever came across, she is rare , and have the capacity of being truly supportive.
Of cource she like everybody else got to be reminded if being out of line.
I´m not ashamed of standing up for how I feel about her.
I prefer a chipped diamond before a perfect piace of coal.
ca
.
Thats whats live really is about isn`t it?
Just learn to be that and it can take you to treamendous succes and popularity in this world.
Honesty is secondary can even but you in risk of being disqualifyed.
Nygirl are in my opinion one of the must purehearted straight up people.
i´d ever came across, she is rare , and have the capacity of being truly supportive.
Of cource she like everybody else got to be reminded if being out of line.
I´m not ashamed of standing up for how I feel about her.
I prefer a chipped diamond before a perfect piace of coal.
ca
.
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