Trials, stigma in treating, opinions?

[DragonSlayer45]

I had my screening today for the Roche- Pharmasett trial I referred to in an earlier post. It is for the polymerase inhibitor R7128. I am most likely going to do this. For anyone not familiar with it the earlier trial back in November had tremendous results. 85% of the genotype 1's went undetectable at week 4 using triple therapy (R7128, peg, riba). This trial will be using 1000 mg of the trial drug twice daily, with PEG and Ribavarin for 4 weeks. Then just SOC for an additional 4 weeks with the option of continuing for another 40 weeks (SOC). This drug looks really good and had no real side effects in the earlier trial.

Now that I am going to finally treat out comes the dreaded Stigmatism of having HCV. The only people who know I have Hep C is pretty my immediate family. I know this subject comes up alot though the years on this forum.

I am wrestling with the thoughts of whether I tell people or not. I am concerned about the sides from treating with peg and riba. I am a pretty upbeat personality and it will be noticable to co-workers and friends if this kicks my ***. Do I tell my bosses? the dispensary at work? I figure they should probably know what is going on right?

Then there is my wifes family. She does not want me to say anything to them because they can be judgmental, especially my mother in law. She is a negative person who I refer as the "flying minus sign" with the personality of an angry hornet at times.LOL. I told my wife if I get nasty from the drugs she better keep her away from me or it may get ugly LOL.

I know some people have posted in the past about how they handled it. I think NY Girl said she just told people she was on Chemo. I don't know if I can do that. There is the part of me that says "Hey I did not ask to get this and I would not bat an eye if I had cancer right" but the fact is since this is a blood born virus people get freaked out and you might as well tell them you have HIV. I remember years ago before I knew I had this their was a guy at work who had it. He died from this but I remember that I was kind of a little freaked when I heard he had it. He had fallen off a ladder and cracked his skull. He got this from a transfusion at the hospital when they put the plate in his head. I mean how freaking tragic but yet I still thought about hepatitis C when I saw him or talked to him. I did not even really know what it was!!! I was ignorant about it as most people are.

Annyway I would like to hear what other think and how they handled it. Thanks

[copyman]

Hi, Best of luck if you decide to do the trial. I was thinking about a trial myself. not sure if i will try boceprevir or telaprevir. Had a question for you, what was involved with the screening process? thanks

[Trinity4]

It's a personal decision whether you choose to disclose or not.  I have told only my immediate family.  None of my co-workers know.  Many people are comfortable with telling those they are involved with at work or casually.  I choose not to because I have to concentrate on keeping myself as even keeled as possible. There are days it takes a tremendous amount of effort to do every day tasks I used to do effortlessly.  Personally, I don't want to spend the time explaining or in some cases defending myself.  I know many disagree with this approach, but it works for me.  Yes, I think this disease should be on the frontline of awareness but unforturately it isn't there yet.  I don't care what people think, I just don't want to have to explain right now.  I deal with the public everyday so my demeanor has to be pleasant and sometimes I just want to rip somebody's head off.  That's when I put myself in check and keep the riba demons at bay.  
For the most part, people are very understanding and if you want to tell those around you I'm sure it will be fine. It's just a personal choice.
Trinity

[sldb]

Iam an E.R. nurse, get up at 5:30am work 7a til hopefully 7:30p, 4 days a week.  Get home for 8p.  During tx. most of my nights were spent trying to get rid of the horrible leg cramps tx. caused. Luckily i never had to use rescue drugs, but came close on many an occasion.  I tried my hardest to put sides out of my mind, but sometimes they won. Please get an eye exam prior to starting tx.  Meds can sometimes mess with your eyes, I had some strange visual experiences while on tx.  Good Luck, Praying for you...(you will be suprised what the human body can tolerate, just try to remain positive and say an SVR prayer everyday, I did , svr now almost 2 yrs.)....Leah

[DragonSlayer45]

96 weeks!!!!!That is a long treatment! One of my biggest concerns is that I have a long commute every day. I travel 60 miles each way. I come home fried as it is. I ahve t wake up at 4:45am and I get home about 5 PM. I am concerned about how I will hold up through that.

[sldb]

I only told my immediate family b/c tx was hard on me.  I had to work during tx, it was all i could do to get out of bed in the morning sometimes and go to work.  I didnt want the constant reminder of my illness, as my day would progress, my mind would get caught up in my work and i did not have to think about tx.  Work brought me an escape i felt i needed to survive tx.  I cut back on my social life due to fatigue.  I did not tell my best friend b/c she had just lost her husband and was so distraught i spent most of my time helping her through her grief.  I do believe this helped b/c i didnt have enough time to think about myself.  Constant reminders of my condition were intially getting the best of me.  Thsi is how i made it through 96 wks of tx...Leah