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

[susan400]

If this trial is like most of the trials that I've been in, you will be needing to have alot of blood work.  Just to keep in mind, that when you do go around people who you don't want to know, make sure that you are wearing your long sleeves..., which shouldn't be a big problem since it's winter.   I had quite a bit of bruising on my arms where all the blood was being drawn.  However, I didn't really keep it a secret that I was going through a medical thing.  For those that I didn't want to know about the Hep, I usually just said that I 'had some health problems and needed to have alot of lab tests'.  Something pretty vague like that usually shuts up nosey people.  I do wish you the best of luck though in a complete SVR!   Susan400

[jankar]

I told the boss, the union and my close workers the HCV thing - some problems with a close (I thought) fellow worker I trusted who disclosed to someone else how she thought I got it.  Then as the side effects kicked in and I became breathless and swayed about a lot, people looked at me funny.  I tell them I am receiving medical treatment but don't tell them what for.   People ask if I have cancer, I say no.  I keep the info to a minimum because imagine having to explain everything to everyone who asked - the sx alone make you exhausted let alone that.  I don't care what they think - hopefully they are sympathetic and grateful not to be me and feel so sick.  There was a lot of interest at first, gradually dying now, some patronising mixed with some general caring.  Whatever - I don't care. They need to be happy they are not me.  Stigmas are everywhere - I am an intelligent middle aged woman and the wrong colour in some circles.  People find that pretty scary sometimes.

I got passed over for promotion yesterday because of the treatment, so s**t happens if you disclose.  But like someone else - I am in a secure government job - I have to do internet kiddie porn to get the sack.  I don't care what they think but I do think it is a good opportunity for the opportunists to get you if they want.  I am paranoid and anxious at the moment and started taking AD's today - they might help me not be anxious about work too.

I had to tell my 84 year old mother and fudge how I got it.  Feel sorry for my brother and sister - what are they going to tell her when they decide to treat. That was harder than work.

[Rockerforlife]

opps...i posted that inthe wrong thread...LOL.....sorry

[Rockerforlife]

Now you know why im a badass

[LaurieChrstmn]

Everyone around me knows. We told a couple of people who told others and before we knew it the whole town knows.

Sure there are a few people who have walked away....but if they walked away without gaining an education on why they are walking away, then so be it.

This virus seems to have a way of sorting out the friends from the pretenders. I don't miss the pretenders and I charish my friends more now then I ever have.

[DragonSlayer45]

Annie,

Thank you for sharing that story. I also think you may be right about the stigma coming from us. You are not alone in that line of thinking.

Hector and Fret,

I completely understand where you are coming from but where I work it is essentially a gov't job. You have to practically murder someone to get fired here and even then may not get fired. I mean I have seen people fail drug tests and they send then for treatment and they are still here. Heck we had one guy send an email to all employees and slammed the director of this place BIG TIME. He is still here. So I do not think I have to worry about that part of it.  I just more worry about people treating you differently but like Fret said I think gossiping is inherent for some people.

I know in my town a lot of people do. Someone I am quasi friends with is the town crier. I mean he knows everything about everyone (except this closely guarded secret). One time I was looking with my wife and kids at houses in another town closer to my work, in anticipation that I may treat one day and it would be easier on me if I lived closer (not to mention better schools etc.). A couple of days later this guy calls me up and says I hear you are moving! I was thinking to myself are you freaking kidding me how the hell does he know that! It turned out innocently enough that my sons teacher asked him in passing what did you do this weekend and he mentioned we looked at houses and the guys daughter was nearby and overheard (she is in training LOL). She went home and told him. At the time he asked me I got all paranoid and I was thinking to myself what does he have my house bugged or something! How did he know that!  LOL So yeah at home mum is the word.

[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

[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.

[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.