Hepatitis C Support Group
Hepatitis C is a blood-borne viral disease which can cause liver inflammation, fibrosis, cirrhosis and liver cancer. The hepatitis C virus (HCV) is spread by blood-to-blood contact with an infected person's blood. Many people with HCV infection have no symptoms and are unaware of the need to seek treatment. Hepatitis C infects an estimated 150-200 million people worldwide.
I am bummed. I'd waited months to get an apt. with a top liver guy at Mt. Sinai. He's supposed to know about all the new TX's and has access to a Fibroscan. My plan was to talk to him, get the scan, and figure out if I can wait for the new drugs, or even the wave after that (It seems the ones about to come out still use inteferon or Riba; the ones without either could be another 5 years). But my husband had a dental emergency and I had to take him to his apt. and cancel mine. He tried to tough it out because he knew how important this was, but he was in agony. So now I have to wait until Oct. All this waiting is quite stressful. If I knew how my liver really was (fibrosure .57 sucks but may not be accurate) then I'd know how to proceed.
Have you asked them to contact you if there's a cancellation?
God bless you & keep you in his care.
xo Debbie
Something you and rass might find interesting...I went to him 1.5 yrs ago and again last week. Both times I had fibroscans but this time he had a newer machine, Last time it indicated cirrhosis and this time it indicated everything was fine. Both results are inconsistent w/bx and other tests. I believe pugdaddy here said that the only true test was an autopsy.
BTW- he apparently had HCV when he was in med school and did soc years ago. He told me that a while ago.
Brigid, I assumed you were referring to my doctor when you mentioned Mt. SInai but maybe my assumption is wrong. I think it's not though...he's a really good doctor I think. I'd recommend him. D?
Oral TX without Interferon - some with Riba and some without - are reported to hit the market starting Dec 2013 and into 2014, depending on your genotype. You can research clinical trials now and if you are in the NYC area you should find some that are accessible to you, again depending on genotype.
Good luck.
But yes (good suggestion) try to grab a cancellation.
then again, you will be that much closer to the new treatments. let me know about dr D.... if my tx fails (find out in dec) that is right where i will head (about 5.5 hours away) for next options......
This stuff takes time, shitty to say and shitty to know. most people have to wait a year or 2 to start treatment. HCV is a slow moving disease and I know how hard that can be hearing, because you learn stuff and read horrible stuff, but keep in mind most of the bad stuff is from extreme cases or neglected cases. Don't be in a huge rush to start treatment. It is HELL. I did Victrellis/peg/rib for 48 weeks, other do just the peg/rib or incivek all of them are nasty! You don't have to be in a big rush, you will probably have to make another appointment for the fibroscan anyway. (doctor's make money per visit). It sounds like you are still active and your liver in compensating, so you don't have to worry too much. If you want to, go sit there for a day and wait for a cancellation or late appointment to squeeze in. Bring a books or something to occupy your time. Let them know you are there and they will squeeze you in! Hope this helps.
Smooches
Let's hope that we Geno 1's (assuming you are?) will have our all oral NO Interferon or Riba within a couple of years. Hell, let's hope ALL genotypes will soon have tx with neither of those two poisons. Recent Gilead trials are showing SVR12 for even cirrhotic Geno 1's with only ONE pill a day - their combo cure: Sofosbuvir/Ledipasvir. NO SIDE EFFECTS from all I know who did one of those trials! People who got the Riba arms of those trials (they were/are called ION2 and ION3) did have some Riba sides. So next - Gilead will submit the Sofos/Led combo pill to the FDA - no idea when - but that's just one pharmaceutical co. Abbvie is hungry too - and has been running Phase III trials for even cirrhotics - but that particular trial had the Riba. The big deal here though is that CIRRHOTICS are having great success achieving SVR12 with these two pharmas' trials. That is HUGE. There are other pharmas out there who are also very eager to get something through the FDA - and they all KNOW that many many of us are waiting for drugs without Interferon, PERIOD - and hopefully without Riba. They want to sell those products and rake in the bucks.
We Geno 1's are a HUGE market in the USA - and those pharmas want a piece of that million/billion (?) dollar pie.... their investors are most certainly hungry for a return on their money too.
I am 66 - probably Stage 3 (two conflicting biopsies - so even a very very excellent hepatologist isn't sure - bloodwork and imaging ... iffy - but I feel I'm at least a late Stage 2) - but I feel pretty good most of the time - and I've had this "bug" (these BUGS) for almost 44 years. I will never know what stage my liver is in (unless, as Kat said, it via an autopsy report - lol) - and it doesn't matter to me that much anymore. I stressed over that for over a year - had a second biopsy, and it was totally different from the one 10 months prior - so finally, I just don't care). I personally would not trust Fibrosure for accuracy - but, neither do I believe that biopsies are the "gold standard" after what happened to me. State 3+ on one/Stage ONE on the second one. The liver is enormous - no doctor will ever again convince me that one 1/50,000 of it on a biopsy slide reflects the stage of the whole liver.
We can wait. We can do it! We need to take good care of our livers (and ourselves in general) during that wait - but ... it will be worth it.