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

[fretboard]

I would be extra careful, you mentioned that you live in a small tight knit community and the guy you carpool with is a gossip.  It's just me, but I wouldn't tell anyone at all at first, see how bad your sx's get and take it from there.  People are ignorant and ignorance breeds fear, you have a family it's just not you so be very careful as friends can turn on you in a hot flash.  Be careful everywhere, work and your social network, people gossip for a living.  LOL  Trust me on that, it's true they have no social life and gossiping makes them feel like they're part of something.  To some people by gosipping it makes them feel better b/c they're f/u in the head.  That was just a free psycological snapshot, of some of the idiots that I've run across. LOL   good luck with your tx

[HectorSF]

As far as people you tell, that's one think. But work..

In most work environments I would be careful. There are some "bad apples" out there that can decide for the company's own good it might be better to get rid of you then possibly have you missing work and using your insurance instead of only paying into it! You don't want to lose your job and insurance while txing. Tx can cost $$$$$. Meds, tests, doctor visits, etc., etc. And it can be tough/impossible getting insurance again while treating. "Pre-existing condition" and all that. Which I think last a year after treatment.
Medical issues in the workplace are to be keep private! No one needs to know anything. Period. Please be careful. "Lose lips can sink treatment!!!

Best of luck.
Hector

[Mary4now]

Unfortunately I work in a right to work state which means the employers have all the rights and you get to work, actually I was fired, funny right around the time of my diagnosis.  If I worked for the city or the state I dont think it would be so easy.  Some people are very educated and understanding of the disease and others are not.  I do know that your employer can make it hard for you (not legally of course,but try to prove it) anyway.  Dont worry, those that really love you will understand, those that dont will have to learn at some point,  Wow, its hard enough dealing w/ the virus and the medical system, then you have the 'other" aspect..  There are people I KNOW will understand and there are some I'm not sure so I dont go there... and I'm not even treating yet....M

[IAmTheWalrus]

I have been pretty open with the whole thing with nearly everyone I am close to or who has ex[ressed an interest. The only regret I have is that many do not really understand the nature of the disease and probably have misconceptions. I often wonder if it would have been better to keep it quieter because of this. I don't know .... you just have to do what you feel best. It is probably better to decide ahead of time and then act according to your decision. Going with the impulse of the moment may not be the right thing to do. I sometimes think I have done that to some extent.

Good luck!

Brent

[Annie441]

First, congrats on getting in the trial. In the beginning I told just my immediate family and had planned on telling no one else, but as time has gone on and anemia sx have gotten worse I have had to pick and choose whom I disclosed to. First I told my piano teacher cause I was having a hard time keeping up with the heavy practice load. I told her I was doing chemo (most people understand that chemo has tough sx) when she asked me for what I just blurted out hep c, to my surprise she hugged my neck and told me her brother and neighbor had gone through tx and she understood completely what I was going through.

My husband and I own our business and there are only four of us in the office. We had decided we would not tell our employees but for the last couple of weeks I’ve been having a hard time with sx. I tried hiding in my office and just concentrating on getting work out, but I’m usually the one joking with everyone and just trying to lighten up the stress we face. I think my hiding was hurting moral in the office. Yesterday I decided to tell my employees what was going on with me, separately of course. I explained all about the virus, one was very sweet and offered to pick up some of my work if I needed her to, I felt compassion not the judgment I feared. The other asked a lot of questions, I mean a lot like how you can get it, where there any symptoms before hand, how did I know to get tested… I just wrote it off as to she wanted to learn. She came into work today and told me that she has made appointments for herself and husband to be tested b/c of choices they made when they were young. I felt like I had done a good deed.

The way I see it is if I can educate one person about this virus and they realize no one is immune and get their self tested and maybe tell some of their friends to get tested maybe all of the stuff I’m going through with the tx is worth it.

My husband has not told his family, at first it kind of hurt my feelings cause I wondered if he was ashamed of me. I now realize even though he doesn’t have hep c it’s his disease also and if he chooses not to disclose I have to respect that.

I wonder if some of the stigma doesn’t come from us judging ourselves so harshly and beating ourselves up for making dumb choices when we were young. I’m not saying judgmental people are not out there and I’m for sure not shouting from the rooftops that I’m a hepper, but after today I’ll be careful who I tell but I won’t be so afraid to say something when I see the need.

Good luck with everything, play it by ear, and in the end do what is right for you.

Ann

[rita863]

one more thought...i wrote down all my meds and put it in my wallet.  i told a co-worker where to find should it ever be needed at work....

good luck