I will be on incivek and soc and really anxious about this tx. I am in the medical profession so
i know alot about lab work and results. Sometimes i think that could be worse at times.
I would rather get into the pharmasset trial, but i screened for the first part of quantum and
did not make it because arms closed before the site got all my labs back. I was told they
probably won't be enrolling in 2nd cohort, and i don't know if i can wait untill June for third
So, after talking with my GI doc, i will be making a decision,
As it turns out, Quantum may not have been your best bet anyway. It is perhaps best not to act out of panic. If I were in your shoes I would be making a lot of phone calls to company execs, research sites etc. Right now, this company is in the middle of a big merger with Gilead which is due to complete within the next two weeks. Probably that is high on the list of priorities and you may not get a response right away.
I can't remember Linda but are you treatment naive? Are you GT1? There is an extension to the BMS/PSI study which is recruiting I think between now and March for failures of the triple (ifn,riba,inc) and also for naives. It is not listed yet but you can try to go to the sites who were involved in the original BMS/PSI study and that is still listed at clinicaltrials.gov. Some of them are being selected for the extension (not all). I know the one in Michigan is selected.
I think we had this discussion before but you could try my journals or hcv advocate to look for similar trials. Just out of curiosity, why is it that you feel you cannot wait until June?
As a medical professional you should have the resources to understand that how people respond to treatment, is on an individual basis. Like all diseases. Yes there are common symptoms and complication that occur is most people but how you as an individual will respond is unique. If you have never had any major illnesses in your life, then treatment can seem and be a daunting task. Ignorance of the reality of illness is a handicap. Having the ability to be knowledgeable about hepatitis C and liver disease takes way a lot of the misplaced fears that people have. It is people who don't understand disease and treatment that don't understand what is happening to them and don't know how to navigate the medical system that have the hardest time doing treatment. Knowledge is power. You should use whatever you know about disease and the medical system to put treatment into its true perspective and use it to your advantage.
Waiting 6 months to do treatment can be done by the vast majority of hepatitis C patients. Unless you have cirrhosis and are worried that you may become too ill to do treatment in the future there is no penalty to treating now vs 6 months or a year from now. Liver disease is a slow moving disease. It takes many decades for hepatitis C to damage the liver to the point that the liver is so damaged that one will be unable to treat and most patients never progress that far. For most people waiting 6 months or years makes no difference only in a very small minority of patients with cirrhosis is there a possible problem of waiting too long.
Whether the Pharmasset clinical trial progresses to stage III or not, no one can say. But there are never treatment regimes that will be available in the next few year that promise to be more effective and possible have shorter duration of treatment. Again this is something to be discussed with your doctor so you know all the benefits and risks of choosing one type of treatment over another.
You should talk to your gastro and learn what stage your liver disease has progresses to and you will learn that there are many opinions available that you may not be aware of.
Also read the posts here (and educate yourself about your illness) and you will learn about the true nature of hepatitis C and liver disease and dispel so many of the myths and misinformation that is in the general public's mind as well as in parts of the medical community that does not deal with hepatitis and liver disease on a daily basis.
Lynda I agree with Hector and would only add that, next to disease, the anxiety around this particular infection is often the HepC patient's worst enemy. Anxiety can cause people to not be able to think straight, to act out of panic or fail to act when all systems say "go", to make poor provider decisions and/or treatment decisions, to become forgetful (eg. forgetting what we have already read about, forgetting to take meds timely), to not notice material in their readings, etc.
Some of us, due to personal circumstances, may be more anxious than others. I think having a patient advocate, a therapist, a relative, a close companion or some other relatively objective party is very helpful in keeping our wits about us in extreme situations. This is a major decision and oftentimes such decisions are best not made alone.
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