Aa
Stage 2 Hep C
During a routine new patient exam I was newly diagnosed with chronic HepC and wondering what treatment options are available (in Michigan). After going to a GI Specialist I found out that I am genotype 1a, viral load of 1.65 billion (6.2 log), stage 2 fibrosis. AST - 86, ALT - 72, WBC 5.8., Platelets 92,000. The last time I had any of these tests was in 2005 and my readings were good then. I've recently had an ultrasound, CT scan and a liver guided biopsy (which showed no cancer). What does all of this mean and what should I expect? Thank you for any information, tips and advice!
just re-read my post. sorry for the horrid use of the English language! LOL! I had taken an ambien and was up looking at my email. Should have gone straight to bed
You asked how long I had Hep C before being treated? Wellll...............I think I might have had it all my 62 year old life-however, when it was actually named Hep C and not Hepatitis non-A non B was just about the time I was given the name Hep C . cannot remember the date. I had biopsies in 1970 because of elevated enzymes. the treatment then was only interferon and I was not given success rate of about 15%, even though my liver had no damage. I was working and married with 2 little ones, felt fine and made a decision it was not worth being sick ,going through treatment with not such good chances of svr. Forward many years, liver started to change for the worse and I got into a trial. The drugs today are so much better, and getting much better with the new protease inhibitors. I feel blessed that I never had symptoms of hep c , and treatment, although having lots of anemia, was well worth the effort.
Dr Gordon is my doctor as well. I only have 2 weeks left in the 48 week clinical trial I was in. As you can see, all of us with Dr Gordon speak very highly of him. I tried with U of M to get into a trial without any luck. One other side note, I think Anna Lok is an expert on Hep B. Any research attached to her name is Hep B focused.
How long did you have HepC before being treated? I didn't know waiting was an option. I've had lots of great feedback about Dr. Gordon and the clinical trials too. I do have a large deductible so I guess it's something I should consider if I can. Thanks for the info!
Thanks so much for the information on Dr. Gordon / Henry Ford. It sounds like most of you have done clinical trials. Is there a reason for this? Isn't it taking a big risk? I need to learn more about the trials I think. Will my GI doctor let me know if he thinks I am a good candidate or is this a decision I make independently? How long does it usually take to get in to a clinical trial? Sorry for so many questions but this is all so new to me and I appreciate any information you can offer.
Thanks for the information and the link. It's very informative and helps clarify a few things. I think I need to investigate how the trials work and how long it would take to get in to one .. pros, cons, etc. All of this is so overwhelming! When I see my doctor later this month and hear his suggested treatment, I want to have all the information I possibly can so I can make an informed decision. Thanks again for your help.
If you do not have good insurance and are worried about the cost by all means you do need to contact Henry Ford Hospital in Detroit --the one on Grand Blvd as they run clinical trial out of that hospital which are free, including a biopsy if you need another one. Dr Stuart Gordon is the head hepatologist there, and clinical director for many trials that go through Henry Ford hospital. He can get you into a trial at no cost to you.
I too am from Macomb county and did my treatment through a trial out of Henry Ford hospital. It's only a 20 minute drive --30 tops. Henry Ford is the only hospital in this area that does free trials, although they have trials out of U of M in Ann Arbor but its a long, long drive and their trials are limited.
Dr Gordon was my doctor and I can't say enough good about him. I finished doing treatment almost 2 years ago and I no longer have Hep C. If you want I can private message you his direct phone number so you can make an appointment.
I highly recommend and encourage you to contact Dr. Gordon as he has spent his whole life dealing with Hep C patients and clinical trials for us.
I too am from Macomb county and did my treatment through a trial out of Henry Ford hospital. It's only a 20 minute drive --30 tops. Henry Ford is the only hospital in this area that does free trials, although they have trials out of U of M in Ann Arbor but its a long, long drive and their trials are limited.
Dr Gordon was my doctor and I can't say enough good about him. I finished doing treatment almost 2 years ago and I no longer have Hep C. If you want I can private message you his direct phone number so you can make an appointment.
I highly recommend and encourage you to contact Dr. Gordon as he has spent his whole life dealing with Hep C patients and clinical trials for us.
I agree about his sense of humor. He is great. And if you get in a trial ( if they are offering any ) all expenses are paid. Gordon might know of trials in the area. Also, their team is the one I used to get me into a trial. You just have to call Henry Ford and ask for the hepatology dept and then explain what you want.
I was working at the time and had excellant insurance, but never had to use it for over a year. BTW, I was randomized into the placebo group. Got the rib and interferon. I took another pill, but whatever it was, was "nothing ". I was very lucky to be svr!
I was working at the time and had excellant insurance, but never had to use it for over a year. BTW, I was randomized into the placebo group. Got the rib and interferon. I took another pill, but whatever it was, was "nothing ". I was very lucky to be svr!
I would highly recommend Dr Stuart Gordon. Great beside manner with a good sense of humor too!
What else did the liver biopsy show did it grade and stage the damage to the liver?
stage 0, stage 1, stage 2, stage 3, etc.
stage 0, stage 1, stage 2, stage 3, etc.
How's it going? are you learning more? I am getting my biopsy tomorrow. I submitted my name for any study that fit my profile 2 years ago and just got a call last month. I am starting with the tests etc. then at the end of January I start treatment. The study is a double blind with 3 arms, 1 arm has 2 new drugs and SOC, the 2nd arm has 1 new drug and SOC, 3rd arm placebos and SOC. If i get the 3rd arm and poor response I will be offered the 2 new drugs + SOC after 14 or 16 weeks of tx.
You can check within your area, University Med Center for any studies or get yourself on there list.
Let us know what your biopsy shows. I had insurance the 1st biopsy, but I had a deductible so I ended up paying anyway, but the hospital settled for 40%.
Good luck, keep us posted.
Mary
You can check within your area, University Med Center for any studies or get yourself on there list.
Let us know what your biopsy shows. I had insurance the 1st biopsy, but I had a deductible so I ended up paying anyway, but the hospital settled for 40%.
Good luck, keep us posted.
Mary
Isn't Macomb county near the Detroit area? If so, Henry Ford Hosp has lots of great hepatologists. I have been undetected ( no virus) since the 4th week of treatment which was 2.5 years ago. My liver enzymes have never been this great! I don't know actually, but a transfusion at 1 month old might have given me this. I am 62. My enzymes were never too high and I had 4 biopsies in the last ? years. The last one about 3 years ago showed I had damage and I better treat!
The cost for HCV therapy (if one were to pay cash) begins at around > $USD 60,000/year. It can be much more if certain ‘rescue’ drugs to boost red or white blood cells are required. The HCV drugs alone are around $20,000/year; labs, procedures and office visits are also required.
We have a list of acronyms here on this page; it’s located in the lower right hand margin in a box entitled ‘most viewed health pages’. I’ll link it here; you’ll want to save the list to favorites or perhaps print it for future reference.
‘SVR’ = Sustained Viral Response’; this is used synonymously with the term cure. It is defined by completing the course of treatment with undetectable viral load; then retesting at six months post therapy; if there is still no viral load at that point, the virus is gone and will not return.
Take a peek at this, and see if it helps; I haven’t read it yet, but another member recently posted it:
http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Newly%20Diagnosed_10.pdf
--Bill
We have a list of acronyms here on this page; it’s located in the lower right hand margin in a box entitled ‘most viewed health pages’. I’ll link it here; you’ll want to save the list to favorites or perhaps print it for future reference.
‘SVR’ = Sustained Viral Response’; this is used synonymously with the term cure. It is defined by completing the course of treatment with undetectable viral load; then retesting at six months post therapy; if there is still no viral load at that point, the virus is gone and will not return.
Take a peek at this, and see if it helps; I haven’t read it yet, but another member recently posted it:
http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Newly%20Diagnosed_10.pdf
--Bill
Thanks for the doctor info. I'm more in Macomb County and thinking when treatment starts I'll probably want a doctor close by. I asked in the previous post, but what is "svr"? Good luck and thanks for your input.
I don't have great insurance and am also starting to worry about the costs since I have no idea what the weekly treatments will cost or if they are covered by insurance. All of this so new that I don't know where to start in terms of seeking information and learning the terminology and what it all means (what is svr?). Have you heard of any books that give a kind of step by step guide that the average person could read and understand? Thanks for your support.
I was not diagnosed with HepC until September 2010. My doctor feels it was dormant for 20+ years and recently activated since all previous tests were good and did not indicate any liver or blood problems until Sept. 2010.
a wonderful hepatologist is at Henry Ford, Stuart Gordon. He has an office also in Novi. Not sure where you live, but another hepatologist is anna lok at U. of M. I think there are others on their team also. I treated with Dr. Gordon in the phase 3 telaprevir trial which is over. He has a practice also and I plan to continue to see him yearly. BTW, I treated for 48 weeks and was svr.
As you will see genotype 1 is difficult to treat w/ SOC riba/interferon, but not impossible I think the success rate is 40%, some of the newer drugs Protease Inhibitors and Polymerase Inhibitors show a high success rate, but they are not on the market yet. They are still being studied. I just got into a study but not sure if I will get the PI's right away. Maybe your doc is looking for a study so can have access to the newer drugs.
I'll be getting another biopsy next week to see the progress from 2 years ago, I showed stage 1 grade 1 and had to wait, no insurance $$ etc.
Keep coming to the site you will get a lot of information, you are on the right track and seem to have the support of your doctor.
I'll be getting another biopsy next week to see the progress from 2 years ago, I showed stage 1 grade 1 and had to wait, no insurance $$ etc.
Keep coming to the site you will get a lot of information, you are on the right track and seem to have the support of your doctor.
Thanks for your response and the info provided. All of the info I provided is recent (Sept thru Dec. 2010). I guess what I meant is that the recent 2010 tests are what showed a change from the blood tests I previously had in 2005, and are what prompted my doctor to now perform the ultrasound, CT scan and liver biopsy all in the past few months. I meet with my GI doc again on Jan. 24th and based off of the recent tests he'll suggest his course of treatment. In other words, HepC is all new to me so I'm trying to learn as much as I can and just don't know where to begin. Again, thanks!
Hi there, and welcome to the discussion group. You have a lot of the pertinent info already; good job gathering that up. It’s all from 2005 though, and nothing more recent, huh?
The only thing that looks somewhat remarkable is that your platelets are a bit low; sometimes low platelets can be indicative of more substantial liver damage, but you say you were biopsied with stage 2 fibrosis? And this was in 2005 also? It might be time to consider another biopsy; they often recommend every three to five years, especially if the patient prefers to postpone/defer treatment for the HCV.
Have you treated in the past?
Right now, the standard of care includes the combination of pegylated interferon and ribavirin; you’ve probably discussed this with your doctor in the past?
There is a new class of drugs now in clinical trial; these are called protease inhibitors, and will be used in conjunction with the current therapy to both increase efficacy (from roughly 45% to 75%), as well as perhaps reduce duration of therapy as well.
The two closest to approval now are ‘Telaprevir’ and ‘Boceprevir’; both have completed phase three trials, and were submitted to the FDA late last year for approval. Internet rumor and press releases suggest they might be available as early as this year, 2011. You should definitely discuss these with your doctor and get his/her take on the situation.
Here’s a list of other drugs currently in various stages of development:
http://www.hcvdrugs.com/
Good luck and again welcome—
Bill
The only thing that looks somewhat remarkable is that your platelets are a bit low; sometimes low platelets can be indicative of more substantial liver damage, but you say you were biopsied with stage 2 fibrosis? And this was in 2005 also? It might be time to consider another biopsy; they often recommend every three to five years, especially if the patient prefers to postpone/defer treatment for the HCV.
Have you treated in the past?
Right now, the standard of care includes the combination of pegylated interferon and ribavirin; you’ve probably discussed this with your doctor in the past?
There is a new class of drugs now in clinical trial; these are called protease inhibitors, and will be used in conjunction with the current therapy to both increase efficacy (from roughly 45% to 75%), as well as perhaps reduce duration of therapy as well.
The two closest to approval now are ‘Telaprevir’ and ‘Boceprevir’; both have completed phase three trials, and were submitted to the FDA late last year for approval. Internet rumor and press releases suggest they might be available as early as this year, 2011. You should definitely discuss these with your doctor and get his/her take on the situation.
Here’s a list of other drugs currently in various stages of development:
http://www.hcvdrugs.com/
Good luck and again welcome—
Bill
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