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

[rita863]

dragonslayer,

we have alot in common i also work for a State University.  I just told the people in my Department. They are really supportive.  i also go to the Jersey shore hahaha, i was born and raised inp philly.  it was easier with my kids they are 24 and 19.  it was a little harder for my daughter (19) with her friends and their parents.  we now live in Chester Springs, a bit of snoppy area. when she was asked whats wrong with your mom, she said " she is on chemo"  i also found that my kids although they are holder, sometimes just don't understand  that i am sick,  kids think their parents are invincible.

whatever you decide i'm sure it will work for you.
good luck and have nice time at the beach!   (my daughter rented a house in margate)

[DragonSlayer45]

I really appreciate everyone's responses and support on this. I do find it very surprising that so many of us do decide to keep it to ourselves for personal reasons or for stigma. I am going to wrestle with this during my holiday weekend while relaxing down the Jersey shore with my family. The weather is going to fantastic (70's-80's).

I understand and appreciate where Rita is coming from. Part of me feels like she does. I feel like "hey you know what I am sick, I did not ask to get this, and it does not change who I am". I also have a great job, at a major University. I have lots of time that I can take if needed.  I am thinking that initially I may tell my boss and two people who depend on me that are scientists, and the dispensary. My boss and colleagues should know why if I need to be off. Being that I am in a trial the first 28 days I will be late a lot and have to miss days for tests. That is a given regardless if I feel like dooty. I will tell the dispensary in the event that (heaven forbid) I get anemic and pass out or some thing happens to me at work. I just think the doctor or Nurse should know what is going on. I also (as I stated somewhere before) have a very long commute every day, about 60 miles. I am concerned how that will effect me as it kills me sometimes already, and I'm not treating.

I also car pool with a guy who lives about half way between work and home. He is a nice guy but tends to gossip a bit. I am not sure how to handle him because for the first month our car pool is going to be shot to hell. He will be probing for answers as why we aren't going to car pool.

Work is actually my least concern. I recently gave up running a youth organization in my town.  I just can't do it anymore and also because I have been leaning toward treating for the last 2 years. I have children and because of the stigma with this and the non-information about this disease., some people may not react real well. My fear, whether founded or not, is that someone might be like OMG he touched my child!!! Then my kids have to deal with that **** at school. I live in a small tight knit community where everyone knows everyones business. I am talking that when I fart not only does everyone know I farted, but what I ate to give me that gas! LOL. Maybe I am just thinking too much about it but it is definitely a concern. Also I am not going to tell my kids until the holiday weekend. I don't want them to worry about Dad.

[GSDgirl]

I more or less have the same attitude as Rita about this.  But my family / friends are very down to earth, caring people.  I train dogs and I told my "dog" friends I also told my "horsey" friends,  We did tell some relatives and some we did not.  

I think I know where you are coming from with the in-laws, some people just don't understand.  I got lucky with the work force thing.....I work at home, and I didn't do much this past winter.

I think it is a personal decision and I am sure you will make the right one.

Denise

[mar148]

Well, I told a couple (3) of closest friends and just my kids and husband.  Even with my clarity that I wanted to keep this confidential (for many reasons other than stigma, but that too) one of my friends told someone who doesn't really know me who is telling the world.  It has not been fun since I made it through tx without making it public and suffering in silence (my husband wouldn't think so) now I am contending with surprising strangers know ing about my hep c.  The closer you keep the information the more you control it, its up to you how you feel about it "getting out"

[rita863]

DragonSlayer45

I work for the State of Pa.  When i decided to treat, I didnt hold back.  I told my co-workers, my boss, and my department head.  I figured if i had to call out alot,  and i wanted them to know why.  They are vey supportive.

I also told all of my family and my husbands family. I dont tell random people, but if someone says " Your not looking well are you ok?  My repsonse is " I am on chemo"  if they push the subject i then say i have Hep c.   I kinda have an attitude with people when i see the juddgemental look on their face, and i call them on it. my first question " Do you know anything about it?   Do you realize how many americans are infected. and then i say and here's how i got it from my first husband who was a drug user.

I know there is a Stigma with this Disase, but i refuse to be stigmatized.


best of luck

Peace
Rita

[DragonSlayer45]

If I am not mistaken we had a similar conversation about a year or more ago and you said you just told people you had cancer to satisfy their ignorant curiosity. I have thought about that but I am not sure if I can do that.

The bigger issue I guess is with my wife's family. She does not want me to tell them, but I think we should. Other than the mother in law and maybe the brother in law most will be fine. One sister is a nurse and her son is in Harvard medical school, two daughter are studying to be Physicians assistants.

On sister lives near my work (like 2 miles) where I live over 60 miles from work. I amy need to crash over there is i get too wiped out from treatment. I do worry about it as I get pretty wiped out just driving it now and I am not on treatment.