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Hi all,

As you know, I am newly diagnosed 1a, stage 1, and am quickly trying to learn all I can to catch up with you experts! ;-)

These are two things I came across in my surfing that you may want to check out. I would be interested in your comments and any good eductional links you have found also. Are we allowed to share links or is that against rules?

First, have you seen/heard the study that indicates there may be a 24-hour predictor to 12-week and longer response in HCV Type 1 treatment? Here's the name of the article and abstract:

~~~~~~~~~~~~~~~~~~
DDW: Patients with Hepatitis C Virus Genotype 1 Respond to Treatment
By Mike Fillon

ORLANDO, FL -- May 22, 2003 -- The 24-hour virological response is a good predictor of virological response to peginterferon alfa-2a/ribavarin therapy in patients infected with hepatitis C virus (HCV) genotype 1 -- especially in those with minimal hepatic fibrosis.
~~~~~~~~~~~~~~~~~~~~~

My initial response to this news is, great, that would be good to know, but then, what if you are not a good responder early on, but treatment could still be effective for reducing damage even if it doesn't clear the virus? It might be hard to continue for the duration knowing it may not "cure" especially if side effects are bad.

Next, I found a webcast for primary care physicians helpful for general HCV info. It is posted by UC Davis on the Continuing Medical Education (CME) site and on docguide.

Both these links were found on docguide which has a lot of good info, articles and webcasts. Some are subscription only but a lot is viewable for free also.

Robyn

[This message has been edited by Robyn_Fla (edited 06-29-2003).]
At stage 1, you probably do not need to be treated,. You may never need to treat if you adhere to really good guidelines for managing your hepatitis C. These are, basically, no alcohol, no smoking or indoor toxins of any kind (like second hand smoking) avoiding toxic chemicals, maintaining a good weight, nutrition and management of symptoms, if any.

You will pick all of them up as you go along (the guidelines, I mean) and a few myths and misconceptions as well, no doubt.

At stage 1 you have time. The luxury of time affords you the broadest range of choices, including the time to see whether you will ever progress or you will, as most do, live along and healthy life learning to manage your hepatitis C. At the end of the day, your lifestyle choices should be the same whether you treat or not. And, starting out with the lifestyle changes, in combination with close monitoring by your doctor, you may find that you do very well. There is also the possibility of new, less toxic and more effective therapies by the time it is needed, if ever it is needed.

There is no rush for a stage one patient to rush into the currently available treatments. It can do as much harm as good at that point, and that is not a statement about viral load. The two major downsides are that fibrosis may increase in severity if you do not respond (and genotype one's in North American have about a 50/50 chance, or less)and, you reduce your chances for subsequent response if you re-treat with interferon (we do not know about future therapies yet)

Treating for personal reasons (to feel good about trying, etc etc) are valid reasons, but only if you are fully aware of the entire spectrum of possibilities and you decide to take your chances.

Remember that some people are in medical experiments (study) and are not being privately treated, yet believe they are. They have donated their body for purposes of study and the doctor is studying the treatment, not the patient. The priority of the clinical researcher is the ultimate results of the study. It is important to know this when someone is gung-ho on treatment. Studies work very hard to keep their human subjects motivated and on track.

So, do your research, but take your time. In the meantime, take very good care. Manage your energy level, stress, nutritional intake, weight, and avoid the alcohol, smoking and toxins mentioned above. These are now scientifically associated with increased fibrosis progression and treatment can do nothing at all in the presence of these substances.

Turns out they, and not the virus alone, may be the culprits to increased fibrosis in many people. You have a manageable disease. It is alife sentence, not a death sentence.

I hope this helps,

thanbey


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[url="http://www.hcop.org"]www.hcop.org[/url]
preapproved by moderator1

[This message has been edited by thanbey (edited 07-09-2003).]
Everyone who has done any web surfing has an opinion.

My advice is to do your own research, work with a provider who has done the same and does not have an allegiance with any drug company (clinical researchers often, but not always, do have one or more. Clinical researchers research the treatment, not the virus.) Ease up and take the time it takes to be comfortable with the choices you make. Trust me, you have time. Lots of it at stage 1.

The nonsense thrown around is that this disease kills. That is false for 98% of those who have it and who have had it for along time. And, it is almost 100% false for those who do not combine alcohol, smoking, etc with the HCV virus. Most people DO have twenty years or more (those in their 80's and 90's being the exceptions!) Treatment does not make your liver whole and healthy. If you have liver disease before treatment, it will likely be there afterwards, too. If you do not respond to treatment or you relapse from treatment, it appears that within two years, you will progress in liver damage where you otherwise might not. Whether there is benefit for non-responders and relapsers is quite unclear. It could make things worse, not better. Something to consider given the low response rates and the relapse rates.

Do not be threatened, intimidated or scared into treating or treating too soon. It is your body and your choice. There is plenty of time, years even, to monitor for changes and revisit a decision.

This is not an opinion, it is fact based on many years of formal education, professional research, conversations with the leading experts at the NIH and elsewhere and now working as part of a basic (this means researching the virus, not the treatment) research team at UCLA and the NIH. HCOP made an invited presentation to the Concensus Conference on the Management of Hepatitis C at the NIH last June. I wrote much of that presentation.

This information is not gleaned from HCV chat rooms and message boards. They are great for support, but often very short on hard information. I chose to post on this board because it seems to have the potential to be the exception to the rule.

This information is available to anyone willing to find it. I admit that it is hard to sort grain from chaff, but the effort is well worth it. Marketing and science, science and marketing: it is so often hard to distinquish the two.

Take your time and take care.

I hope this helps,

thanbey



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[url="http://www.hcop.org"]www.hcop.org[/url]
preapproved by moderator1



[This message has been edited by thanbey (edited 07-09-2003).]
Hi all,

Since I posted the original topic, I feel the need to note the reference again (for PopcornCB), although Sean did note various research at length also. ;-)

Here is the reference located on docguide website (can search by author's name or topic):
~~~~~~~~~~~~~~~~~~~~~~~
DDW: Patients with Hepatitis C Virus Genotype 1 Respond to Treatment
By Mike Fillon

ORLANDO, FL -- May 22, 2003 -- The 24-hour virological response is a good predictor of virological response to peginterferon alfa-2a/ribavarin therapy in patients infected with hepatitis C virus (HCV) genotype 1 -- especially in those with minimal hepatic fibrosis.
~~~~~~~~~~~~~~~~~~~~~~~~~

Point well taken, Cjari, if my reponse was not promising after 24 hours, would I discontinue tx? Well, until I am faced with it, I am not sure but I can tell you that since I am taking the "to treat or not to treat" concept very seriously (I am 1a Stage 1 fibrosis, 41 years old), perhaps I would stop treatment if it didn't look like I would ultimately respond well. For me, 24 hours of tx vs. 48 MONTHS when I am undecided if I even want to pursue tx at all might make the decision to try it a little more attractive.

In any case, I welcome future news and medical references, and all your opinions in this regard.

Thanbey - I, for one, do not consider any of your views on tx as negative or anti-tx. I highly desire to know all sides, experiences, and research and not just the opinion of one doctor that is advocating tx for my circumstance. As he and others do point out though, I have some time to decide, so my initial rush to tx has been tempered by the knowledge I am gaining in my personal research.

Thanks to all who share informed views on this highly charged and personal topic.

Robyn


[This message has been edited by Robyn_Fla (edited 07-16-2003).]





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