Aa
To treat or not to treat...my perspective again...
We are all individuals. While there are predicators as to whether someone has a better chance than others to reach SVR, it is the individual who will respond one way or the other. These are only predicators not absolutes. This goes for obesity, platelets and many other aspects of treatment and/or side effects and ability to work. That is why doctors “practice” medicine.
I’m not going to give any medical advice or study information. These are my observations and response to txt as I see them and as how they relate to me alone.
I was diagnosed last summer with Hep C, 1.a. I started Pegasys and Ribavirin in November of 2008. I have since finished treatment. I started txt weighing over 260 lbs and am currently around 202. My viral load was over 11,000,000 which is pretty high. My platelets were 44 when I started because I have ITP which is a platelet disorder. They are currently 172 which is extremely unusual to have them increase on txt instead of decreasing. No-one can tell me why. I was UND at 12 weeks and am 100% compliant except for two times I took double the riba by mistake.
First thing, for all of you out there trying to make up their minds as to whether to treat or not. This is a difficult decision and mine wasn’t easy either. I chose to treat now instead of waiting for new drugs. I have a firm support system in place and a good job. I’m aware that new drugs are coming out that make the odds better in getting SVR, but these drugs are in addition to and not in replacement of current txt (as far as I know).
I have a 40 hour work week in a stressful environment. I commute so you can add 2 hours per day on to that. I have only missed one day of work in the almost year that I have been on txt. I did have to take a week off before txt to get my platelets up before starting.
My side effects have included weight loss (I needed it), loss of hair, headache, weakness, lethargy, anger/rage, brain fog, earing loss, loss of appetite, insomnia, loose stools and constipation (from headache medicine). While all of these sides were uncomfortable, they were doable. Some sides have been constant through txt and some have come and then disappeared.
If I can help anyone, I’d be happy to.
I’m not going to give any medical advice or study information. These are my observations and response to txt as I see them and as how they relate to me alone.
I was diagnosed last summer with Hep C, 1.a. I started Pegasys and Ribavirin in November of 2008. I have since finished treatment. I started txt weighing over 260 lbs and am currently around 202. My viral load was over 11,000,000 which is pretty high. My platelets were 44 when I started because I have ITP which is a platelet disorder. They are currently 172 which is extremely unusual to have them increase on txt instead of decreasing. No-one can tell me why. I was UND at 12 weeks and am 100% compliant except for two times I took double the riba by mistake.
First thing, for all of you out there trying to make up their minds as to whether to treat or not. This is a difficult decision and mine wasn’t easy either. I chose to treat now instead of waiting for new drugs. I have a firm support system in place and a good job. I’m aware that new drugs are coming out that make the odds better in getting SVR, but these drugs are in addition to and not in replacement of current txt (as far as I know).
I have a 40 hour work week in a stressful environment. I commute so you can add 2 hours per day on to that. I have only missed one day of work in the almost year that I have been on txt. I did have to take a week off before txt to get my platelets up before starting.
My side effects have included weight loss (I needed it), loss of hair, headache, weakness, lethargy, anger/rage, brain fog, earing loss, loss of appetite, insomnia, loose stools and constipation (from headache medicine). While all of these sides were uncomfortable, they were doable. Some sides have been constant through txt and some have come and then disappeared.
If I can help anyone, I’d be happy to.
Your question poses a response dilemma for a lot of us. I'm a 4 time non-responder and know the agony of defeat. However, if you consider there is no other treatment and in my case, the ever hanging dark cloud above me daily of the possibility I may get to the point of needing a liver transplant and not getting one in time, there's no question in my mind that I want to go for a 5th treatment.
I won't do the traditional treatment any more since it did greatly affect my body and looks and promises no results. I will however go for the Protease Inhibitor drugs which the doctor is currently trying to get me before they are released to the public.
I was one of the fortunate to not become anemic or have other sides to have the doctor stop treatment. In all four cases (except for the Infergen disaster), treatment was stopped because I did not respond after months of trying.
I think if anyone can wait, they should. The doctor is best to make that decision though. In my case, I can wait but with caution and scrutiny and timely lab tests. I hope for the best for you and anyone else agonizing over this problem,.,,
Magnum
I won't do the traditional treatment any more since it did greatly affect my body and looks and promises no results. I will however go for the Protease Inhibitor drugs which the doctor is currently trying to get me before they are released to the public.
I was one of the fortunate to not become anemic or have other sides to have the doctor stop treatment. In all four cases (except for the Infergen disaster), treatment was stopped because I did not respond after months of trying.
I think if anyone can wait, they should. The doctor is best to make that decision though. In my case, I can wait but with caution and scrutiny and timely lab tests. I hope for the best for you and anyone else agonizing over this problem,.,,
Magnum
Sorry I cannot seem to type correctly today
It should read everything we've stated is "wrong" not "wroong" and
I was "quite" thin not "quit" thin.
It should read everything we've stated is "wrong" not "wroong" and
I was "quite" thin not "quit" thin.
It seems that some of the experts here who send adamant messages about BMI and Treatment are giving the opposite advice that the experts in the fields have been giving some patients."
They are saying that obesity is a plus factor for treatment? I've never seen anything in study data except the exact opposite information. Can you please post the data, perhaps everything we've read is wroong or not current information but all I have ever heard discussed by any expert is that obsesity is a negative predictor and one should do everything they can before treatment to remedy the situation.
Nobody ever said someone who is morbidly obese cannot achieve SVR - just that as with someone with cirrhosis...it's more difficult.
And to be objective I was quit thin and athletic when I started treatment which is supposed to be a positive factor yet I did not clear until somewhere between 12 - 24 and I was almost double dosing.
They are saying that obesity is a plus factor for treatment? I've never seen anything in study data except the exact opposite information. Can you please post the data, perhaps everything we've read is wroong or not current information but all I have ever heard discussed by any expert is that obsesity is a negative predictor and one should do everything they can before treatment to remedy the situation.
Nobody ever said someone who is morbidly obese cannot achieve SVR - just that as with someone with cirrhosis...it's more difficult.
And to be objective I was quit thin and athletic when I started treatment which is supposed to be a positive factor yet I did not clear until somewhere between 12 - 24 and I was almost double dosing.
Re: "We always hope for the best outcome for anyone treating a disease, whether it's cancer, hcv or any other type of disease that requires very strong drugs for a long period of time." Amen to that! I totally agree.
It's too bad you were not able to fully hear my message. There are numerous people with high BMI who are turned off of this wonderful MedHelp community b/c they aren't being heard. It seems that some of the experts here who send adamant messages about BMI and Treatment are giving the opposite advice that the experts in the fields have been giving some patients. In fact, some have been down right rude about it and that just isn't acceptable. Not saying that about you or Marcia, by any means, but maybe that might help you understand my earlier responses and defensiveness.
I'm not saying we should ignore science. My advice, rather, is to embrace science and look at ALL the data, including personal experiences not found in formal studies, and not discount them. My reaction to the "you have to be careful" statement was that it was discounting. That was my opinion, and I'm guessing I'm not alone. People have a right to voice their opinions without being discounted. There are other ways of sharing information. Again, totally my opinion. I'm not trying to be a bully about it. I think this forum usually does a good job with being sensitive and supportive to people in general. No reason why we cannot do the same on this thread, right? I'm less worried about sensitivity than I am about just being respectful, mindful, and open to hearing what's happening in the tx world that may contradict some of the studies out there.
Please feel free to email me if you have questions/comments. More than happy to chat w/you.
It's too bad you were not able to fully hear my message. There are numerous people with high BMI who are turned off of this wonderful MedHelp community b/c they aren't being heard. It seems that some of the experts here who send adamant messages about BMI and Treatment are giving the opposite advice that the experts in the fields have been giving some patients. In fact, some have been down right rude about it and that just isn't acceptable. Not saying that about you or Marcia, by any means, but maybe that might help you understand my earlier responses and defensiveness.
I'm not saying we should ignore science. My advice, rather, is to embrace science and look at ALL the data, including personal experiences not found in formal studies, and not discount them. My reaction to the "you have to be careful" statement was that it was discounting. That was my opinion, and I'm guessing I'm not alone. People have a right to voice their opinions without being discounted. There are other ways of sharing information. Again, totally my opinion. I'm not trying to be a bully about it. I think this forum usually does a good job with being sensitive and supportive to people in general. No reason why we cannot do the same on this thread, right? I'm less worried about sensitivity than I am about just being respectful, mindful, and open to hearing what's happening in the tx world that may contradict some of the studies out there.
Please feel free to email me if you have questions/comments. More than happy to chat w/you.
"The thing that came across a bit negatively was that you took the opportunity in Kathy’s thread to add a note of caution to discuss something that didn’t pertain to her outcome".
Just because it didn't pertain to her outcome doesn't mean the awareness factor should not be presented. She mentioned the negative factors in her original post. Nobody came in broaching the subject just because they felt like it. Everyone is entitled to their own perspective. This is an open forum and it's not about sensitivity here, it's about facts.
Thank goodness for studies and statics. Otherwise, we could not move forward with the appropriate decisions for our own individual treatment. The information regarding negative predictors is out there. It's up to the individual how they wish to proceed.
We always hope for the best outcome for anyone treating a disease, whether it's cancer, hcv or any other type of disease that requires very strong drugs for a long period of time. Many people beat the odds, despite of the negative predictors but this is an open forum and everyone should be entitled to their opinion whether they agree or disagree.
Good luck to Kathy and hoping that 12 wk PCR is UND.
dabdees
Just because it didn't pertain to her outcome doesn't mean the awareness factor should not be presented. She mentioned the negative factors in her original post. Nobody came in broaching the subject just because they felt like it. Everyone is entitled to their own perspective. This is an open forum and it's not about sensitivity here, it's about facts.
Thank goodness for studies and statics. Otherwise, we could not move forward with the appropriate decisions for our own individual treatment. The information regarding negative predictors is out there. It's up to the individual how they wish to proceed.
We always hope for the best outcome for anyone treating a disease, whether it's cancer, hcv or any other type of disease that requires very strong drugs for a long period of time. Many people beat the odds, despite of the negative predictors but this is an open forum and everyone should be entitled to their opinion whether they agree or disagree.
Good luck to Kathy and hoping that 12 wk PCR is UND.
dabdees
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