Hi...this is what I know.
I've had HCV for 20+ years and found out just under a year ago. I finally got into the specialist last July and found out 09/05/07 that I'm genotype 1a/1b with a high viral load (doctor's words). From reading these forums briefly, I already know that I should find out exactly what my viral load is and what is considered high. The doc has recommended 48 weeks of Pegetron and I have a liver biopsy scheduled for 09/17/07. Then I'll know what shape my liver is in.
I've been doing some research and spending the weekend reading as much as I can and trying to be smart about this.
Did anyone get a second opinion? (Here in Canada it doesn't cost anything to do that but it sure takes a helluva long time.)
Did any of you have treatment recommended and decide to wait and why?
Not sure what else to ask because I don't know what I don't know.. if you know what I mean! Wondering what any of you can recommend to be sure I find out before I start any treatment.
Hm. That gives me pause. He wasn't necessarily going to do a biopsy as he considered my viral load high enough that drugs were going to be required regardless of the results of a biopsy. I asked for one anyway because I want to KNOW what shape my liver is in. So he went ahead with it. Starting to wonder...if I need to pull in a second opinion.
Perhaps a bit of encouragement. I'm 55 yo, currently in week #4 of a clinical trial. Stats: Genotype 1b, grade 2 stage 2 on biopsy, early periportal fibrosis. My viral load starting out was 22.1 million--which is considered "high". At any rate, I'm currently in a 48-week Hoffman-LaRoche induction dosing study. The drugs are PEGASYS and COPEGUS. So far...
Get the viral load for week #3 Monday. So far treatment has been tolerable, fatigue being the biggest side effect, with other less nagging sides. Plan to work through entire 48 weeks and plan to beat Hep C...and so can you.
Thank you for that encouragement. I'm 46. I absolutely plan to beat this. I'm realizing I don't have nearly enough information as all the rest of you seem extremely well informed compared to me and I'm thinking I'll go for the second opinion and when I go for results of the biopsy I'll be ready with questions. I'm not doing drug therapy until I clearly understand my health picture and the implications and I'll do it in a heartbeat once I'm sure it's required and I won't waste too much time coming to a conclusion. Three kids that are young adults and I'm a single mom. No hesitation.
That seems like a significant drop in your viral load from one week to the next.. is it? Good luck to you. Will be interested to know how it goes for you as you go along.
All I'm saying is some people have hep c for decades and die of something other than hepatitis while others don't fair so well. A biopsy will show you how much damage has been done to your liver. Then you can make an informed decision on when or if you want to start treatment. When you get your results you can talk things over with your doctor. Since you are doing your research you should compile a list of questions to ask. Ultimately the decision to treat lies with you. The more information you have the easier it will be for you to do what is best for you.
I've had hep C for 30+ years. I've had no symptoms and only found out about it because I donated blood one time. The stats: 15% of people clear the virus by themselves, 20% need a liver transplant and 65% have it chronically for many years, and many don't know it. So far they have idenitied 6 genotypes. Genotype 1 is the toughest to clear requiring 48 weeks of interferon + ribavirin. The other types are treated with interferon+ribavirin for 6 months. Most prevalent in the U.S./Canada is genotype 1 with a high viral load. High viral load is over 2 million. People in this category have about 40-45% success rate with treatment. Other genotypes have about 75-80% success rate. Liver biopsy results are put in grade & stage 0-6. If you are grade and stage are 0-1, you may be OK just to watch it. Anything 2 or higher, they recommend treatment. 2-3 is fibrosis stage, 4 or higher is cirrhosis, which is severe scarring of the liver. Your doctor probably recommended treatment because with a high viral load, he knows which way it's going. I went through treatment because it's better to do it now when you're still healthy before you get cirrhosis, because you can only get worse in the future. It's pretty standard therapy based on your lab/biospy results, so I don't think you will need a second opinion. The results: I started with a 5 million viral load, down to 13,000 after 3 months. It sounds good, but the only number that matters is zero. It's not where you start but where you finish. Anything other than zero means it will come back. Also, they can't really measure zero. The lowest they can get is no detectable level, which may not be zero. That's why they want you to stay on the interferon for 3-6 months after your viral load shows you've cleared. In my case, even with over 99% reduction in viral load, my doc said I was non-responsive and ended treatment. But my viral load is way down and my liver function is normal for the first time in 20 years, so my liver has a chance to heal for a while. The good news: they are doing lots of research on hep C. They are finding that there are many people like us who've had it for 20+ years with no symptoms. For instance, that's what Mickey Mantle died of, but he also didn't stop drinking. They have recently found a new protease inhibitor which works, but still has to go through clinical trials. It will be on the market in 5 years or less. My doc said it's better to try the interferon now instead of waititng, because I can only get worse in 5 years. But now that my liver function is back to normal, I can afford to wait. Good luck to you
Going from 5 million to 13000 IU/ml in 12 weeks is a 2.59 log drop. That makes you a slow responder, not a non-responder, since you had more than a 2-log drop. More and more doctors are considering the option of extending treatment to 72 weeks if detectable at week 12 and UND by week 24.
It is important for you to know how to classify yourself. You did respond to treatment, albeit slowly.
Thank you so much, paddy and all, for taking the time to pass on all that information. I do much better when I'm well informed. At this point, my biopsy is in one week today so I'll not have to wait long for the remainder of the results I need. In the meantime, taking the necessary steps to be ready to proceed with treatment if indeed I decide to go ahead. Good luck paddy and all.
One option you might want to consider is to wait for the new drugs to get approval. Telepravir is a shorter duration treatment with a higher SVR rate. If your biopsy shows little damage, you can certainly wait years for new treatments.
High viral loads may not be an indication of the speed of progression of the scarring and although tx is easy for some people, it is brutal for others. Please get a second opinion. Non of us are doctors, so we should not give any advice other than to seek good medical opinions..
No worries, Andiamo. What I know is that my own decisions ultimately rest with me. I value the information that other people have to offer but it's up to me to sift through it and educate myself and see it through the filters of my own life priorities and circumstances. I may pursue a second opinion, that has worked in my favour in the past and it will cement things for me.
I'll look into telepravir ... thank you for that. All information is a good thing for me right now.
Awaiting the biopsy and results at this point and that will bring things into better focus for me.
I am currently in the Telepravir trial. It is blinded, so I won't be able to see the impact on my viral load until my 26th week in the trial. I am currently in week 21. Results from earlier trials are very promising. The drug is being developed by Vertex pharmaceuticals ticker: vrtx.
There will be a phase III trial of Telepravir starting late fall. It is for treatment naive patients, so you might be able to get into it if there is a medical center near you that is participating.
I was G1b, infected for around 30 years, VL 26,000,000 range, liver histology late stage 3. Diagnosed in 2005, started the Vertex Telapravir [VX950] trial in mid 2006.
- VL dropped to UND around day 15 of dosing, and stayed UND for the full 24 weeks of dosing.
- SVR at 26 weeks post-x. 36 weeks post tx PCR will be done next week, but it would be extremely unlikely to see a relapse at 36 weeks.
The bottom line is that this dragon CAN be beaten, and that there are new drugs coming that are looking promising for a shorter treatment and a higher rate of clearance to SVR. While its never good to discover you have HCV, this just happens to be a time when the prospects are better that they were just a couple of years ago.
I am a geno 1A and 1B also. Technically they say it doesn't matter if you have one or two, although geno1A is harder to kill off than 1B.
Don't get too up in arms before you have the biopsy report back - viral load won't help you decide if you really need to treat now or if you do have time to wait and see how well the Vertex trials work out. It seems like it can be truly helpful however there are it's own set of side effects that come with adding it to the interferon and ribavirin.
You've come to the right spot for information. I treated for 72 weeks - it's not the easiest thing in the world but you can do it. You just gotta gear up your head and your heart and get them in the right place and go for broke.
The doc made it seem like the biopsy was inconsequential with regards to treatment indicating it was required regardless of the biopsy results. However, from reading many things here, I feel otherwise and I do plan to wait for the biopsy results before making decisions. I note you're 46.. same as me.
I know I can do it ... I have conquered plenty in this life already and I have three great kids that are my motivation. I've registered for my fall course regardless and I have been doing exactly what you suggest...I've been gearing up for it and getting ready to do battle in whatever form that turns out to be but reserving my energies until I know exactly where I need to direct them. Now I'll just sit tight for awhile...keep reading things and wait til the bx results are in.
Thank you for the info and encouragement and good luck to you too.
"The doc made it seem like the biopsy was inconsequential with regards to treatment indicating it was required regardless of the biopsy results."
We are not doctors here, but a lot of doctors are woefully under informed about HCV treatment and the current state of the art. The bx is far from inconsequential. In fact, its your ONLY accurate guide to making a time line decision.
- If your bx shows liver histology at Stage 2 or lower, you have the time to wait until the new drugs currently in trial become generally available. HCV progresses slowly. Starting treatment with SOC at this stage makes little sense you could easily wait until the new drugs are available.
- If your bx shows Stage 3 or higher, then time is a more important factor. You don't want to let another year or two pass if you are on the edge of cirrhosis!
The good news is that if VX-950 pans out in Phase III trials next year, then its likely to become available in 2009. The opportunity to participate in the Phase II trials is another option.
Hi PSP...yes in Ontario...Southern Ontario, an hour drive from TO. Thank you. My doc is a Gastroenterologist, a Hep C specialist. Does that make him a hepatologist? (SO much to learn.) Thank you very much, appreciated.
wow - I am an hour drive North to Toronto - I live in the Orillia area - I go to Toronto Western Hospital and am very pleased with the Hep Team they have there...Not all Gastro's are Hepatologists - Hepatologist means a gastro has training in the liver as well as the entire abdomen area..
It took me 6 months to get into see my Hep Doc - and I had to demand a liver biopsy - they can't refuse you if you request it, but they don't like ordering it - too expensive they say LOL
How do like this cold front we ar getting - brrrrrrrrrrrr I want sun and lots of it LOL
APKhaos and everyone, thank you for your comments. From the information shared by so many here and reading various things I've come to the conlusion that regardless of what the doc says that the bx results count for a great deal. This is really disillusioning for me as he wasn't going to do the biopsy. I like to be able to trust my doc and now I'm not sure I do and in fact I know I don't at the moment. I walked out of his office preparing to go into tx because that's what he said was required. And I'm wondering how many other people he said the same thing to and how many other people weren't fully aware of their options and proceeded when they had other options. BIG questions in my head. I went ahead and told my DAD for pete's sake that I had to do tx because of what the doctor said. And if my bx results come back a certain way, I'll be holding off. And I put my dad through that for nothing. I feel embarrassed and I feel terrible. I'm so frigging thankful I didn't say anything to my kids. It's a good time for me to do tx in many ways however if the results are clearly one way or the other, I am or I'm not. If it's borderline...more thinkin' to do. I'm impatient to know my reality...I'm terrible with limbo. I can deal with reality just fine...but not so well with waiting to find out what it is!!
PSP, took me ten months to get in to see the specialist. He's apparently the only gastro in our area who specializes in Hep C. I had to ask for the bx as well. Seems a bit criminal to make someone wait ten months when a bx will determine how long someone can AFFORD to wait and when a bx is the only real determinate. The blood test took two months to get results regarding my genotype and viral load...how long did you have to wait for that part? Got the appt for the bx two weeks after so that wasn't bad at all.
To anyone...how long is the wait in the U.S. for a bx once the HCV diagnosis has been made?
PSP....Once I know where things are at, I'll be very interested to know more about your Hep Team, if you don't mind me asking for more information on that. A drive to TO is nothing, was there yesterday in fact. Like I keep saying, waiting for the results of the bx. I'm keeping my energies harnessed until then...I have alot on my plate and I'm trying to get things tidied up during this waiting phase so that I'm ready to proceed full steam ahead with WHATEVER direction I'm going and so that I have enough time and energy to put into it.
Yep, the weather sure is crazy here lately...typical Canadian fall though, eh? You never know what you're going to get from day to day. :)
Thanks again to all for the info. Appreciated more than you can know.
When I found out I was HCV active I lived in North Bay - My family Doc was clueless about how to write a req for genotype and Viral load - I had 3 blood draws before they finally got the correct verbage..The samples were then sent to Toronto lab for testing - Well they lost the first one - had to redo - it took them 3 weeks to get the results done and only after my husband used his influence with the Hospital Administrator - So in total it took me about 6 weeks to find out I was genotype 1A , viral load 560K
Then another 6 weeks to see a new gastro up there in North Bay - another 4 weeks to schedule the biopsy - 2 weeks to get results and then 6 months to get in to see the Hep team at Toronto Western - What a nightmare - But it is all in the past now - this disease is always hurry up and wait when dealing with health care professionals, very frustrating...
After I met with the Team at Toronto Western they sent me to have tests done for pre treatment approval - Saw a Cardiologist for stress tests and ECG - Saw a Optamologist for eye testing, had ultrasound of abdomen, had colonoscopy - So from the time I learned I had this disease to the time I acutally took my first shot of Intereon it was 1 1/2 years (I took almost 2 years trying to decide if I was going to treat or not)...But, I am on week 33 of 48 now and it all seems so long ago - Once you begin treatment most of the daily frustrations go away, or at least it did for me...
I wanted to treat in the States when I first found out (I am an American citizen, but have lived in Ontario for several years) but my Medical Insurance had lapsed and they do not have any kind of programs available there for those without health coverage, other than government social service programs, such as disability and welfare - I did not qualify for any of them...I am glad I did not go home to treat - I hear many horror stories about the Insurance companies giving peope a hassle about paying for certain things hep related, like extensions of treatment and so on - And I really do not think I could find a better team in the States than what I got here - If you google Jenny Heathcote you will see what I mean - She's known world wide as one of the leading researchers of Liver Disease and HCV
Just take it one step at a time and try to be as patient as you can be - I found a hobby helped me get my mind off it a bit...
My timeline has been diagnosis last fall by family doc, waited ten months to get in to see GI. Then two more months to get blood test results on Sept. 7th that told me my VL and genotype. Bx tomorrow Sept. 21. Results from bx on Sept. 27th. So about a year so far from diagnosis to blood test results. Then 3-1/2 weeks from that to bx results, which is pretty fast on the Bx thankfully. I've waited that long...another week and a half will fly by hopefully. Have tons going on til then to keep me busy, thankfully.
It took six months to get in to see the Hep team after bx results? Wow. I'm not even going to think about that until the bx results but I'm glad to know that timeframe. At least I'm dealing with the GI instead of the family doc.
Can I ask what your bx results were when you decided to go ahead with treatment? If you'd rather not say, no problem.
I'm staying busy.. have plenty of things on my plate and I'm not thinking about it obsessively all the time but it is a constant little drumbeat in the back of my head and I'm always thinking of this thing or that thing that needs to be addressed. I can't do anything more until the bx results so I'm doing what I can in the interim which is getting my "house" in order just in case. I just lack that virtue called patience. I'm not good at the holding pattern thing. Since I know that about me.. I'm going to have to find ways to deal with that too!! lol :)
Thanks for your info, Beth. I'll do some more googling. Like you said.. step at a time.
I was diagnosed with Hep C in 1993, a second test was clear. The doctor said, the first was a false positive. Now, here it is 2007, I'm 46 and they say it's positive. I have an appt with the specialist on 9/24, what questions should I ask? Should I have any symptoms now? Thanks for any help.
I have low liver damage and vl - My bx showed I was at stage 1 grade 1 with 30% fatty liver...
The decision to treat for me was this :
I am over 50
I was symtomatic (major muscle and joint pain with fatigue)
I am insulen resistant (not uncommon with HCV - I highly recommend you request to be tested for IR)
I have fatty liver (this can increase the fibrosis progression)
Chances of achieving SVR with low liver danage and low viral load are pretty good
Chances of achieving SVR after 60 lesson considerable
I could not stand knowing I had a untreated virus eating my liver
Timing was right for my husband and I - we will retire in less than 2 years and I wanted to be over with this by retirement, for we plan on doing a lot of traveling.
I suppose I could of waited for the newer drugs to come to market - but that is not something that is coming for years yet and I did not want to take the chance of lessening my chances at SVR due to potential increased fibrosis during the wait.
It is a very personal decision whether to treat or not - Probably one of the most important decisions you will ever have to make, so get your research done and do some very long soul searching - Consider all the benefits and all the risks...If I had to make the decision over again, knowing what I know about the effects of Interferon and Ribaviron I would not hesitate to do it the same way...
Is your dr. tx. your insulin resistance. My Fatty liver has progressed to NASH. Dr. feels it is interfering with my Tx. I am week 16 and still not undetectable. Just up the interferon to 150. We are looking at treating the Insulin resistance.
I am a study for IR - I have had two tests since I started tx - the second test has showed the IR has gone from moderate to slight - so the study is showing the IR was brought on by HCV - I have been UD since between weeks 9-12 and the second test was after I was UD....Is your fatty liver over 30% of the liver, like mine - If so - my Hep Doc told me that Pegasys stores fat in the liver and the Fatty Liver can seem a bit more pronounced while on tx - but 3 weeks after you stop Interferon it should be gone back to where it was prior to the tx - so maybe the NASH was brought on by tx in your case..I wonder - why are they upping your Interferon, cause you are still not UD, or from the NASH?
Upped Interferon to 150 because still not UND at 16 weeks.My pre tx Biopsy showed Fatty Liver , The NASH Dx. was made then, results said Mod. - Severe. .Just wondered if you had tx. for th IR. We are discussing putting me on Metformin once a day. I am a 1a genotype, as I understand it Hep C geno 3 often has fatty liver and it resolves with Tx.
Where is this study you are in?
sorry hun, I just saw this post - I am in a study for IR at Toronto Western Hospital - It is all GT 1's and I was one of the last to enroll so most of them are already through treatment and the Doc told me yesterday they have a 100% success rate in that they are all insulen senstive now - so it is almost a sure thing that the IR came from the HCV - There is nothing they can give you for IR that I am aware of, or fatty liver...I was told that Pegasys stores fat in the liver and a few weeks after post tx it goes away - I sure hope so
Doctor said I was jumping the gun when I mentioned 72 weeks. Said first you have to be undetectable then we will count from there. It sure is looking like 72 weeks to me.
Thanks for the info. Good Luck with your results.
If you can find where and how I can acess results of the study it would be appreciated.
you can call Toronto Western and ask for Doctor Solomon (6th floor Liver Clinic), he runs the study - But it is almost over - I don't think he is taking on new clients - But, maybe he can tell you where else you could go...
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