hep c clinical trials

I am suppose to begin a clinical trial with the drugs: ribavirin (corpegus),ritonavir,interferon,and boceprevir. Has anyone been thru this treatment? I have no idea what to expect, I have only just googled all of the serious side effects and I have to work. I am 62 yrs. old, female, and self supporting with no insurance. I am wondering what side effects to expect and will it keep me from working. My liver biopsy is in the morning and I have to decide soon. I am needing some insight to what serious side effects this treatment has caused other participants. Appreciate any advice.      

[Mary4now]

If you are in a study read the packet they give you.  They are trying to keep you comfortable while you are treating, but limit what measures they take if you get sick.  My hemoglobin went down and they reduced my doseage of riba because riba can cause that problem, that was in my 12th or 13th week.  
What kind of work do you do?  If your sitting at a desk, and can take breaks, you should be fine.  You may want to figure some sick/vaca time as the treatment goes on because some of these drugs are accumulative.  Just pace yourself.
I love my monitors, doctors, vampires ( blood draws galore) I trust them and you develop that.  
The interferon can cause white blood cell drop and they may dose reduce with that as well.
I had very little side effects in the beginning and as time went on I did get a lot more tired.

I think I know how you feel entering this,  I always had it in the back of my mind, well I can quite any time I want, and now I'm determined to see it through, for my sake and for the sake of the study.  There are a lot of people out there who are working very hard to eliminate this virus, and I see at my clinic that these people really care.
The treatment certainly isn't fun, but its doable Its also an opportunity to receive good treatment for free w/ support.  Its like a second chance.

Dont worry and read everything they give you.

Good luck w/ you biopsy, just relax and have faith
let us know how it all goes.
Mary (i'm 62 this yr. too)

[Mary4now]

By the way I am so broke it isn't funny ( at 62 )  After all of this I am definitely regrouping and simplifying.   In a way I'm done with the endless trappings of the world.  Its time to know what is really important. I dont have any insurance either.... sometimes insurance can be the biggest pain you have to fight for everything, unless of course you have premiere insurance and a great job.  just deal with what comes up for you and the rest will unfold.
think good thoughts

[penny2948]

Hello Mary, Thank you for your input. I really don't know anyone that has been thru this treatment so i am going in blind. What do you mean by "limit what measures they take" if I get sick? What should I not let them do? My biopsy went well. I went to work and took it easy. I have a management position, but mostly sit at my desk. Is getting tired the only side effect you had? How many months are you into treatment now? Which drugs are you on? I am going to be on Interferon, ribavirin and boceprevir-a new drug that just came out with a higher percentage of curing Hep. C. They told me 1 man was cured in 1 week. I am in Houston,Tx. going to Advanced Liver Therapies, (Clinical Trial). I will be hearing from them soon, so I guess I will start the treatment. I just read about all the serious side effects, like heart attacks, thyroid failure, liver failure and on and on while in this treatment. I also have to work.Would you have been able to work every day while in this treatment? I do not have any vacation or sick days yet, this is a new job. I will check my email this evening. Hope to hear from you. Thanks. Linda

[Mary4now]

If you are in a trial they screen you intensely, I had so many ECG for the heart it isnt funny, before dosing, after dosing 4 hours later, they are very careful to make sure you are a good candidate for the trial.
I am on the SOC which means standard of care and basically is the drugs being used for years with some success.  interferon and ribavarin, these drugs both have some nasty, uncomfortable side effects but have cured the disease for some people, genotype 1's realized a 40% cure, so there needed to be a new drug.
Voila,,,, the studies.
I was undetected at week one as well which makes me think I got the good stuff as well as the SOC  , You must be undetected for a certain amount of times, months before you can be considered cured.
I could work every day on this treatment if my job were not high stress.  You must pace yourself and give yourself a lot of rest on your days off and after work.  You will be closely monitored so if your hemoglobin drops they will take the appropriate action, on my study the only action was to reduce the riba which was causing the drop.  they do not want to give you other drugs to counter act the problem usually.
So the worst for me was the tiredness, the nausea.
How long would you be taking the treatment,  I was not affected much at all until about week 10, I am now at week 17.
talk w/ you soon, hang in,
mary

[penny2948]

I am also on the SOC but I will be getting the new drug boceprevir that has just been released. One group is with a placebo so i won't know if I am getting a placebo for ribavirin or not. They won't know till next week about the biopsy results as to my stage. I haven't been sick so I don't think it is bad. I have read about some people commenting on the treatment being hell on earth and serious thyroid problems and other stories so I am a little worried about that. I can't get off work any day but Monday's so I hope they won't need me to come in any other day or if anything is wrong I can't just rush down to see them. I do want a cure but I wish we had more of a guarantee as to the results. I was told the treatment can go from 6 weeks up to 48 weeks, depending on my tests and response. And if I am on a placebo and not even getting ribavirin then how effective is taking only the 2 other drugs. They really should tell us more before going in as to the percentage of cure in others with my stage and tell me which drug i am on for sure. If I don't know exactly what drug I am on, placebo or not, then how do I know the cure ratio.
I may not be willing to take the risk if I am not in the high percentage of cure. I am going to call them tomorrow and ask a few more questions.  How many times were you undetected besides the 1st week Mary? Do they consider you cured yet. I do sit at a desk most of the day but a few times a day I have to go out in the heat and show the property. Can you tolerate heat at all if you had to, for say 10 minutes at a time? Will talk to you later.   Linda

[penny2948]

By the way Mary, if you have a cell phone or unlimited long distance, you can call me on my cell at 832-352-9402 and perhaps discuss more questions and answers a lot easier on the phone. Call any time.
Linda