Aa
Genotype 1a/1b
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.
Thanks in advance and best of it to all of you.
Trish
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.
Thanks in advance and best of it to all of you.
Trish
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...
Beth
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...
Beth
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.
Hi Beth,
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.
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.
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...
Beth
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...
Beth
I'm catching up here...
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.
Trish
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.
Trish
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
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
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