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

[nygirl7]

Good luck Dragonslayer!  Why don't you just play it by ear...if you are handling the treatments and nobody can visably tell anything is wrong with you then heck, don't worry about telling anyone?  For some people it's not as completely evident that something is wrong...I was one of the opposite people it made a HUGE difference in me so I had to say something.

It's not right that there is SUCH a stigma but...it's the way it is.  Most of my friends here at work wouldn't ever talk to me or come near me if they knew what I had really had.

[Texas714]

I only told my immediate family and 2 close friends.  No one at work.  I've been happy/comfortable with that.    

[DragonSlayer45]

I can not speak for all trials but for this one the screening process was just me supplying them with my records from my recent blood tests, biopsy etc. so they saw I fit the criteria for the study (geno 1 naive in my case). Then they perform EKG and take copious amounts of blood. I will also have to give them 24 hours of urine and a fecal sample before starting. If I remember correctly in another trial that I did not participate in they mentioned something about chest x-rays in addition to the other stuff so I think it depends on the drug and what they are watching for. Good luck in your decision on participating in a future trial. I hope that helps.

[fretboard]

If you choose to go on this trial good luck to you, it sounds very promising.  The only ones who know that I am HepC positive are my immediate family, my wife and a few friends most of them I don't even see anymore.  My wife's family doesn't know either and I hope they never find out, if it were me this is what I would do.  I would tell the people who know I have HepC that if I need to tell anyone else who doesn't know, that I would be telling them that I was on chemo.  That way if anyone ask anyone else who knows you, the person who knows already knows what you're saying.  That's it, if anyone ask you any questions, I would just say that this is very personal to me and I really don't care to share my personal healthcare with anyone at this time, maybe I will at a later date.  Personally I hope I never have to tell anyone at work, I work with peace officers and it wouldn't be a good idea.  At my job it's supposed to be illegal for a supervisor to share anybody's medical history with another employee or anyone else period.  The problem with that is supervisors are human and people gossip, and I trust nobody.  That's just me, I wouldn't feel like I was lying if I told anyone that I was on chemo b/c I don't see a difference.  To take it a bit further, since I work in a professional environment if I had to absolutely had to tell someone I would have my doctor write a note b/c I had to do that once before, and the doctor asked me what I wanted him to say.  The last time it happened to me and I became toxic in 2003 and I had to miss a bunch of work all the doctor wrote was that I had liver disease and was under his care.  I told both supervisors that day that I had HepC and I told them b/c of the stigma attached to the disease that's it's imperative that nobody find out.  I don't work there anymore, oh and they didn't ask me anything about how I got it or anything.  I think it's illegal for them to go there as well.  I don't know your job situation, but that's what I would do.  God Bless    

[Mary4now]

Unfortunately there is alot of stigma, just look at how we feel about it.  I dont care if someone is a junkie or a nun, no one deserves to have this virus.  There is so much judgement going on and my reality is if your sick you deserve help.  
I think there are alot of people out there who agree, however there are alot who dont understand, sooooo I would just say to anyone you are not really close to outside of your medical team is that you are on chemo, and frankly, you'd rather not talk about it, but thank you... This is one big crazy world and you can get all the support you can take right here and from whoever you are close to.. that is my 2 cents... M

[mar148]

I decided I finished treatment 9 weeks ago and did not tell anyone but 2 close friends and my immediate family.  I did stop doing anything unnecessary and just did work and things I actually had to do on treatment.  For me, treatment was hard, but not impossible to still live my life.

Now that I am off treatment I am glad I did not go public, there are days as I wait for the results I just forgot about hepc and I am grateful. Maybe some day, if I clear I will be more forthcoming, but handling my own emotions was more than enough for me.  Handling others questions and issues is just to hard for me right now.