Boceprevir Trial Detroit Michigan Area

[Tippyclubb]

I was called in to do screening for the Boceprevir Trial October 22nd.  Treatment will start in 2-3 weeks. Seeing as I am stage 1, grade 2  have decided not to treat yet.  Maybe someone would be interested in getting into this trial, if so you can contact Zonca 313-916-8422.

[virgocharm]

hi i will be in that trial starting in 2 weeks at henry ford. sooner the better i say. i also am 1a  megotcha, feel free to holler. thanks to everyone here in the forum. i have not been let down , just enlightened. i just had my screening and biopsy. waiting on results. they are wonderful team of doctors and nurses, ready to help you in every way possible.

[megotcha]

Thank you so much everyone for the response.  As for your questions Frijole, I do not at all know what condition, what stage of the condition, nor of the diagnosis of anything.  You would think after all this time I would knnow more, however he has chosen to be very secretive about it, until now.  That is until now that I am finding out about the intesity of this.  I am going to be very adamant about finding out all these answers.  When I have breached the subjuect prior it is always an "I don't know answer"  Even when he was goiong to the doctor regularly he was very evasive.. Now that I see this, I realize my life is involved very much also, as I intend to be here with him forever.  So it is time for me to get off the pot and get the ball rolling.  
  I am definitely going to suggest the Henry Ford treatment. And I do recall why he didn't do the Pegysis.  It was because of all the hearsay of how harsh it was, although now I don't see how he could think anything would be worse than it is now, only it comes and goes and as soon as it goes... Okay , he just walked into the room and he says he does not know what stage,yes he has had a biopsy and as I reiterate he was seeing a doctor regularly and he has a colonostomy (ssp) scheduled for this 29th and he will ask his doctor all the pertinent questions, however he still refuses to let me accompany him.  I will work on this and I will find the answers and will accompany him.  I am going to contact the HF asap and give all the information that I know.  He states his liver is not scarred, not jaundiced, gets rashes quite severe, although not more often than four or five times a year.  No bleeding, no gums bleediing.  These are statements he is telling me as I type.  No soreness in his liver.   He just asked me, what about the depression, that is a horrible side effect that he states he is going through.  And for his doctor to have prescribed the Pegasys in the beginning he must be worse off than he is stating to me.  
  I am sorry if I lost yuo during all this I say, he says.  I am as scattered here in my writing as are my thoughts of the events.  I am going to do research and keep on this forum steady. I thank you all so very much for the positive attitudes and positive responses.  I feel very comforted by the thought that there are people there to help me with this horrific disease and the effects it has on all, family members, friends and of course those actually infected.  What are my chances of infection, by the way.  Not that it is as important to me as the cure for him.  Thank you all again.  Megotcha

[Rockerforlife]

BOC all the way....THEY EVEN  have a roll over...and tghey even supply the procit

[frijole]

So what has made your decision lean towards Telaprevir?  I have been looking into both programs and am leaning to Boceprevir.  Having been through a treatment (SOC) before, I know how my body will react to he INF and RIB.  I will need Procrit in order to stay at full dose, or I will probably be unable to work, with HGB very low or will have RIB dose reductions.    Schering Plough allows rescue drugs (for low RBC and WBC) which avoid dose reductions.   This is the main reason I lean towards BOC.  In addition BOC does not produce the nasty rash that VER does.  

Good luck getting in the other trial
frijole

[Tippyclubb]

megotcha you have come to the right place to learn all you can about hep c.  Read these post, ask questions and you will learn alot.  I am sorry to hear your boyfriend is not doing well, but some people decide not to do treatment because its very harsh.  All you can do is to mention they are doing a trial treatment at Henry Ford Hospital ( the one on Grand Blvd ) and the treatment is free--no cost to him at all.  If he wants to enter, he must do it quickly for they will be starting in a few weeks.  He can call the number I gave in the first post.  

Has he had a biopsy?  Do you know what stage and grade he is?   Some people choose to put off treatment depending upon the biopsy results.  At this point all you can do is try talking with him and bring up the Boceprevir Trial and he may just be ready to do it now because he is feeling so sick.  His attitude and thinking may be different towards treatment, and he might just try anything to feel better.

I feel awful you have to go through this and you don't know what to do, but theres not much you can do except talk to him about treatment.  If he chooses not to treat then thats a decision you have to make, whether your willing to stand by him no matter how sick he becomes.

If he won't do treatment try to at least get him to go to a gastroenterologist / hepatologist , so you will know exactly what is going on with his liver.  Please go to Henry Ford--they are one of the best in the country.  Dr. Stuart Gordon is head of the liver research dept. and that is who I see.   Maybe if he finds out his liver is in bad shape it might motivate him to do treatment.  

I hope things work out for you and he sees a doctor.

Frijole I have choose not to treat at this time because theres very little liver damage.  I am also on the list for the Vertex Trial and when they call, I will treat.  

[frijole]

tippy - I can't believe you are giving up the opportunity to do this trial.   I know there are many reasons to treat and not to treat but this is an opportunity to see if you can beat it and put it in your past.  You should at least give it a try

gotcha - welcome to the forum. It looks like you have focused in on hepatitis C as being the cause of your significant other's problems and you may be exactly right.   I am trying to figure out why he wasted all that medicine the first time.  Unless he has had a change of mind and heart, I don't know what you can do except encourage him to go to the doctor and show your support for what might be hard times.  With three children living at home and a supportive mate perhaps he will have the will to seek treatment.  But the first step is to get him to the doctor or in necessary, the emergency room.  

There are many people here who have beat this disease at all stages.  Please encourage him to not give up hope.
frijole

[megotcha]

  This may sound very ignorant on my behalf however here it is.  My boyfriend 58, and I have been together for 5 years.  I have known since day one that he has hep C, however, I chose to remain in the denial stage, I would suppose could be said.  He showed no real symptoms that I was aware of and I chose not to think about it.  Every once in a while he would say he was excessively tired due to the hep and I would just go with it.  I have never been to a dr with him, which he used to visit quite frequently in the onset of our relationship.  As I look at it now, the visits have all but diminished.  He initially had a treatment system called Pegasys, (I believe proper sp.), sent to him one package weekly.  He never took any of the medication and I stock piled it in the refrigerator according to expiration date and then would discard properly.
    As time transpired, as I reiterate, the doctor appointments dwindled as did the mention of it.   I am one of those who believe in a strong mind and if I can't see it, it doesn't exist.  I had ovarian cancer at the age of 24 after the birth of my second boy and had a partial hysterectomy, followed by an entire less than six months later.  Then diagnosed as still active and existant, kemo for 9 months, remission.  Gone, as far as I am concerned, I am 46 now.  Gone. Anyways, not about me.  My boyfriend has recently, (within the past month or so) become more and more lethargic and extrememly irritated with me at the drop of a hat. Or even not the drop of a hat.
   Today, he is the worse I have ever seen as far as the ability to stay awake, and two days prior he awoke with enlarged hands.  Tonight he came up to me in one of his more coherent 5 minute awake spans and stated words I have never heard him even slightly breech in the past almost 6 years this Nov.  He came to me and said, "Your old man is sick, baby.  It is hitting  me hard.  I was afraid it was going to come all at once, and it has.
   His three children from a prior marriage live with us, mother just a block or two around the corner.  And I am at a loss.  What is  going to happen?  What can I do?  What do I say to the kids as far as their constant nagging him as they are old enough to be self sufficient , yet norman spoiled teen agers that he indulges due to the illness and his fear of not being there for them.  I never gave it any heed as he has never appeared abnornormal to me, nor have I ever known any one personally with hep.  And certainly never heard of someones fatality due to the disease.
   You are the very first of anyone I ever have discussed any of this with, but we live here in the Detroit, St Clair Shores area and it is obvious now that I can vision it, this is real.  I must take a complete crash course and learn all there is to know.  This is the rest of our future that I though finally I had planned with one lone soul finally after 40 years of bs.
   Maybe I am request too much of you. If so, please forgive me, I am  not intending to burden you, just really caught me extremely off guard as I said, I chose to never really believe it, in fact.  Today, I am brought to reality.   Wake up Alice, you're not in Kansas anymore, eh?  If I am being to obtrusive, please forgive and I will appreciate the phone number to contact and sling most of this at them as I will be more reserved tomorrow after this has been probed and filed and set into position in my little I guess you could say choosing to wear rose colored glasses world.  Now, boom, all at once.  You can't ignore somethings when someone else is involved.  What I can make my body do or not do with my mind does not pertain to all.  And I cannot instill that in another.  Thank you for unintentionally being my immediately pounced on sounding board.  forever appreciative even if this reaches no where at all, it has finally been opened up to begin the harsh phases of reality.  I hope to show some positive hope for resolve.  I will need assistance to do so in shut a minutely alloted time, though.  Help?