Hep C Discussion Forum

Hi Steffie, sometimes we need to pour out all our Hep C worries to people who understand, and we all know how important the health of our families is to us.  Best of luck to your mother with her end of treatment results, and to you with your ongoing tx.

ps - Steffie, is there a reason why you are posting your replies in large bold type?  It would be much better for us if you could use the standard font!   Cheers! 

Thank you so much for your answer.  I found it easy to do research when I was first diagnosed and then after I started treatment I cant seem to find the energy to do research for my aunt.  I feel overwhelmed when I try and sort all the new drugs out and what they do and who they are for. Thank you for simplifying it.  I will focus my reading on these two trails. 

I feel like I have to do something.  One of the reasons I decided to do treatment at such a young age and with no symptoms was because Ive seen the wait-and-see method not work out well.  I had an uncle who was told by a doctor that he didnt have to do anything about his Hep C because most people die with it not because of it.  He was told nothing about not drinking or a healthy lifestyle only that he should have it checked out every once in a while.He continued to drink and went on like normal until  years later he started having really bad health problems.  It was downhill from there and he passed from complications due to liver failure.  He had a lot of other things wrong with him other than the Hep C but I feel like if he had had a doctor who made him feel like it was important to be proactive about his health then maybe he would still be here. 

My aunt also has known about her positive antibody test for years but has choose to believe it was a false positive and tried to forget about it since she is in the healthcare field and had decided beforehand that she didnt want do treatment since it would interfere with her work.  This was years ago.  Now two years ago her year her ex-husband started having symptoms due to Hep C and got a biopsy.  He has cirrhosis and his doctor advised treatment.  He is not cleared but is doing much better heath wise.  His condition brought the dangers of Hep C to our familys attention and since a lot of my family had been children of the of the 70s and had experimented with drugs together.  We all got tested and the tally is 3 uncles with it, 1 aunt, my mother.  Out of the all the kids Im the only one who has tested positive.  I feel very unlucky.   Out of my uncles two have done the treatment when it was still only the shot and the ribavirin.  Like I said one is doing much better than before and the other is cleared!!!  My mother has just finished her treatment (did Victrelis) and has been UND since week 8.  Hoping she stays that way! :)  Anyway my aunts situation worries me because I am so scared of losing her.  Im scarred her doctor will just tell her to wait for new treatment and she might wait until its too late.  I know it might seem funny but right now with so many people around her are doing treatment and urging her to go get herself checked out is what got her out of denial.  Now I am just worried her doctor might not be taking it seriously and that scarred me most of all!  I read here that there is no such thing as MILD cirrhosis yet that is what her doctor told her she has.   

Did I mention Im on treatment and today is actually my shot day.  I took it a few hours ago and usually I just lay down and veg out in front of the TV but instead this week I decided to thank you for your reply and ended up pouring out all my family Hep C history.. sorry about that I just kinda felt compelled to get it out. I am very worried for my aunt even more that I was for myself or my mother since our livers were in such better shape.  I just wish we could all beat this thing and go on with healthy livers.

Hi again Steffie, yes, I expect your aunt`s doctor is trying to give her some encouragement and put her mind at ease.  We all need hope, but I can understand you being concerned.  It is possible that the new Abbott drugs will be available in 2 years time but there`s no guarantee of that at this stage.  Abbott and Gilead both have phase 3 trials currently taking place which are looking very promising, and Gilead is slightly ahead with their sofosbuvir (prev GS 7977) which is expected to get FDA approval later this year.   If you want to keep track of the progress of the drugs currently being investigated then the best thing to do is read the posts and updates in this `Clinical Trials` section.

As far as a vaccine for Hep C is concerned, research is under way, but again there are no guarantees about when this will be available.  Here`s the latest information I`ve seen on this...

http://hepcfriends.activeboard.com/t52232952/inovio-pharmaceuticals-to-initiate-clinical-trial-for-hep-c-/

Your aunt`s elevated afp levels don`t necessarily mean that she does have cancer of the liver, but if her test results do show that she has this then I think it will be something that her medical team will need to assess before any other treatment option or trial can be considered. 

Well I guess my question would be how do I find out about the state of clinical trials myself.  Her doctor seems very invested in the Abbott trails and seems sure it will be FDA approved.  When asked she wont give her any options except to wait for it that.  Is this because she has no other options?  Is the Abbott trail such a sure thing?  My doctor seems to have more faith is the Gilead company.  I try to find info on these trails and compare how they are doing but there is just so much information I dont know where to start.  Is there some website on Hep C trails 101 or something that lays the framework in order to understand and be able to follow the state of these trails? I just dont see how her doctor can be so sure about one trail that she wont give her any other options.