Aa
Just got my biopsy results today and start tx Saturday
Hi Everyone. Just got my results from the biopsy today and am genotype 1a stage3 Level 3 Fibrosis...whatever that means. I asked the doctor for a copy of my bloodwork and biopsy and they are "supposed" to mail them to me.(I am not holding my breath..lol. Can anyone explain to me what stage3 level 3 fibrosis means. I am to start treatments on Saturday. Thanks and good luck to everyone.Thank God for this site.
I had my first echo/radio isotope stress test 4 mo into tx. It was a long morning, but I think the Procrit had already begun working, because I did not faint on the treadmill.
It's the psychological effects and the extreme added stress on the tx. I have never experienced such anxiety in my life. I take 10 mlg of Lexapro a day to help with that. I see an MD, Gastroenterologist, Hematologist and now a Cardiologist. Can anyone imagine taking a nuclear stress test on tx? I'm going to set up apts with my Docs and try and get a concensus. I want to find out if it is critical for me to stay on. Thanks everyone. I hope everyone on this board does well with tx.
it is so difficult because it is so long a torture! the misery just drags on and on and you feel worse and worse. take one day at a time and PLEASE take pain medication as needed. I give vicoprofen a lot of credit for my tx completion. I told myself and MD that the biggest pain I wanted to endure was labor anything else I refuse to.
what things are making you wish it was over? I know the list can be long, but fatigue and apathy can take a good hold.
what things are making you wish it was over? I know the list can be long, but fatigue and apathy can take a good hold.
Thanks for your reponses. I'm trying very hard to stay on tx, but it is getting more difficult everyday. My Gastro said it is up to me. I know everyone is fighting and can appreciate everyone's battle. I just read TnHepguys post above and what a fight he's had. I'm trying to get all the information I can.
It is such a personal choice. I am 57, 1a, 1.5 mil vl, bx g1,s1-- much the same as you -- and I decided to treat. I think you have to weigh all the odds. I took two sheets of paper and wrote reasons to treat on one and reasons not to treat on the other. My list not to treat was longer, but my list to treat was more compelling (to me). At 52 you probably have a few more years to make the decision. At 57 I didn't think I did. Medical insurance is one reason I treated now. My two prescriptions cost $60 a month - without insurance they are $2500 a month.
Risk to others was a factor too. My dentist won't do a dental implant until I am clear of the virus - he says no elective surgery. What about paper cuts at work. No more pedicures (too risky for others). There are lots of little things that add up.
On the other hand, those oral tx's may be just around the corner and may be worth the wait...
Risk to others was a factor too. My dentist won't do a dental implant until I am clear of the virus - he says no elective surgery. What about paper cuts at work. No more pedicures (too risky for others). There are lots of little things that add up.
On the other hand, those oral tx's may be just around the corner and may be worth the wait...
I appecriate any one who would respond. Would you treat if you new the HCV had been in your body for over 30 years and your liver biopsy was stage 1? No sides, no pain from the HCV and no symptoms. I do not drink, smoke or do drugs. Also, would you wait for a shorter term treatment? I'm a 52 yo male 1b,vl 2.5mil.
May God give us peace beyond all understanding.
May God give us peace beyond all understanding.
I'm 54, 1b, vl 620,000, stage 1. I am on week 25 of 48 tx. I went on tx due to age and I wanted to get this **** over with now, not later.
same here, stage 1, grade 2, dx at age 51. treated because aging reduces svr, and I did not want to gamble with being the odd ball proving hcv damage is not linear.
If I waited for another bx 3 yrs from the first one and it had progressed, I would have been 54, even older. then tx for a yr or longer, 55 or 56 yrs old. if relapse, tx is another yr or more...you get the pic.
I finished tx in Nov, and so far PCR is still undetectable...we will see in Sept, the 9th mo PCR.
If I waited for another bx 3 yrs from the first one and it had progressed, I would have been 54, even older. then tx for a yr or longer, 55 or 56 yrs old. if relapse, tx is another yr or more...you get the pic.
I finished tx in Nov, and so far PCR is still undetectable...we will see in Sept, the 9th mo PCR.
OMG...please say that you are joking about seafood and tx....lol. Is there anything that this treatment doesn't mess up??? Hope that you are doing well with treatment.
Thank you so much for the info and for your honesty!! I don't deal well with sugar coating things anyway. I work in a plastics factory and also work third shift ...Midnight to 8a.m...it is really hot in there these days..hopefully they will work with me as far as working and being sick. My foreman assured me that they would. My gi has me starting on pegasys and copegus so we will see how it goes.
Kathy...you are right..they are doing a CBC...uric acid (whatever that is...lol) and a liver panel every two weeks for the next month.What is a PCR? This whole experience should be interesting because one of the sides is brain fog...I have had that already for years so no telling what I will be like after I start tx...lol. I am so glad to hear that your sides are nonexistent.Hope that you continue to do well!!!
Michelle....Congrats on being undetectable!!! That is great news and it really give the rest of us hope.Hope that you also have had minimal sides.
Michelle....Congrats on being undetectable!!! That is great news and it really give the rest of us hope.Hope that you also have had minimal sides.
Yes third shift is pretty hard until you get used to it. Thank goodness I work in the printing dept. so not quite as bad as molding.
Try to enjoy your last couple days before starting tx. Go out for a big meal. If you like fried seafood, get a Captain's Plate or something similar. Fish might turn you off during tx.
DJL
DJL
i'm 48yo fm; type 1; stage 2 grade 2; vl 1.5mil.....i just took shot # 16 and my 3month blood work showed the virus undetectable! there are more and more type 1's responding to tx. good luck to you and ditto about this forum...i don't know what i'd do without it....post your sides or questions about them as they arise - everyone will give advice, funny stories, heartfelt sympathy, whatever - they do it all here at medhelp!
<3 michelle
<3 michelle
The bloodwork your doctor is referring to may be a CBC-- this is to check on your white and red blood counts. It is the PCR that is used to determine the quantity of virus in the blood. My doctor also has me taking blood tests (CBC's) every two weeks. He said he won't do a PCR until week 12 but I am going to request he have me tested at week 4. I think he will.
Keep coming back here. Let us know how it is going
Kathy
Keep coming back here. Let us know how it is going
Kathy
A PCR is a test that measures the amount of live virus in your blood. Hopefully, your first one (after starting tx) will be undetectable.
Truthfully, this tx sucks. The interferon is toxic as hell and the riba makes your red blood cells explode 24/7. No, I'm not going to sugar coat the experience. Most folks are tough enough to hack it, but tx is not fun. I think of it this way. . .I am still in my 30's and a healthy 6' 200-pounder. A shot of pegintron pretty much knocks me down for 3 days afterward. You can't tell me that's good for you. Does the stuff kill hep c? You bet it does.
As for the food, everything tasted like **** to me the first couple weeks, but slowly your taste normalizes. I haven't had fish in a month and a half, and I love fish. Maybe I'll try a filet-o' at McD's to see if it tastes ok now. That way I'll only be out a couple bucks if I can't eat it.
Work can be tough on tx as well, due to the apathy and fatigue. I am a self-employed lawyer, so I guess I have it pretty easy. I read a recent post about someone starting tx who works as a postal carrier. I can't even imagine how tough that must be, esp. in this heat.
DJL
Truthfully, this tx sucks. The interferon is toxic as hell and the riba makes your red blood cells explode 24/7. No, I'm not going to sugar coat the experience. Most folks are tough enough to hack it, but tx is not fun. I think of it this way. . .I am still in my 30's and a healthy 6' 200-pounder. A shot of pegintron pretty much knocks me down for 3 days afterward. You can't tell me that's good for you. Does the stuff kill hep c? You bet it does.
As for the food, everything tasted like **** to me the first couple weeks, but slowly your taste normalizes. I haven't had fish in a month and a half, and I love fish. Maybe I'll try a filet-o' at McD's to see if it tastes ok now. That way I'll only be out a couple bucks if I can't eat it.
Work can be tough on tx as well, due to the apathy and fatigue. I am a self-employed lawyer, so I guess I have it pretty easy. I read a recent post about someone starting tx who works as a postal carrier. I can't even imagine how tough that must be, esp. in this heat.
DJL
Third shift in a plastics factory?? Oh yeah, I been there and done that. Not bad once you get used to the smell of the molding presses. I recall there were some jobs at the plastics plant that were pretty easy, but somewhat boring, like inspecting stuff. It was the 3d shift part that wasted me. I remember the good ole days of buying a case of beer at 7:30 on a Friday morning, when the work week was done.
DJL
DJL
Thanks so much for your information. I am a 52 year old female and I guess I have had this virus for about 20-30 years. You have both gave me some of the answers that I am looking for. My gi says that we will treat for a year and he is having bloodwork every two weeks for the next month and then I go back to see him on the 29th for a follow up.This site is amazing and I just thank God that I found it. You are all awesome. I hope that all of us get through this and have great results. God Bless!!!!
Congratulations on your decision starting treatment and hopefully things will go well!
Your profile is similar to mine. I'm also stage (level) 3 fibrosis as well as genotype 1.
Genotype is the type or strain of Hepatitis virus you have. Genotype 1 is the most resistant strain to treatment so it has to be treated more agressively.
Your stage is the level of liver damage you have. Fortunatly, you are treating just in time because you still don't have cirrhosis (scarring) like many of us. Still, you're only one stage away, so that also means a more agressive treatment approach is in order.
Many doctors use a cookie cutter approach with geno 1's that goes something like this. Standard dosing of pegalayted inteferon and ribavirin for 48 weeks. They also test your blood usually at week #12 to see how you're responding to the treatment. If you don't have what they call a "two log" (decimal point) drop in 12 weeks, they usually stop treatment and classify you as a non-responder.
More progressive heptologists practice a more agressive, individualized treatment approach.
Individualized treatment can consist of a combination of higher doses of medication and/or longer (extended) treatment beyond the 48 weeks. It also usually involves more frequent blood tests and more agressive intervention for side effects. Especially the use of Procrit for anemia and Neupogen for low white blood cells.
As a geno 1, stage 3, you want an individualized approach.
Discuss this with your doctor and/or nurse practioner in advance.
Ask them how often they plan on testing your blood for the virus. At a minimum they should test at week 4, 12, 24 and every 3 months thereafter. Hopefully, your insurance (or yourself) can afford it. If not, do the best you can.
Also ask them what they plan to do if you don't have a two-log drop by week 12. What you want to hear is a back up plan like switching you to a stronger drug such as Infergen.
Also, ask how they plan to deal with side effect, especially anemia and low WBC. The answer you want to here is that they will be agressive with Procrit and Neupogen. What you don't want to hear is that they will reduce your medications. A reduction in medications lowers your odds of responding. Again, discuss this in advance with your medical team.
In my case, my doctors tested my viral load weekly until I was undectable at week #6. This is considered an early viral response (EVR) which generally means a shorter treatment period.
However, because of my genotype, stage, age (58) and sex (male) it was decided I would treat for 72 weeks. Two other doctors recommended 48 and 96 weeks respectively. It's still not a science and different opinions even among respected heptologists are to be expected.
That said, the minimum a type 1 should treat is 36 weeks after you clear the virus completely. But given your profile (unless you're a youngster :))I'd suggest at least 72 weeks if you can tolerate the side effects.
I've left a lot out but the basic idea is that you want to sit down with your medical team and discuss with them their strategy on beating down the virus. They won't necessarily use the same strategy that I (or others here may suggest. That's OK and even expected. But they should have a strategy that treats you as an individual and that you are comfortable with.
If all you hear is the cookie cutter approach, it's never too late for a second opinion.
I know it's a bit of info overload but you'll catch on quickly if motivated.
Again, you made a good decision to treat at just the right time.
Keep asking questions and keep us informed on how things go.
Jim
Your profile is similar to mine. I'm also stage (level) 3 fibrosis as well as genotype 1.
Genotype is the type or strain of Hepatitis virus you have. Genotype 1 is the most resistant strain to treatment so it has to be treated more agressively.
Your stage is the level of liver damage you have. Fortunatly, you are treating just in time because you still don't have cirrhosis (scarring) like many of us. Still, you're only one stage away, so that also means a more agressive treatment approach is in order.
Many doctors use a cookie cutter approach with geno 1's that goes something like this. Standard dosing of pegalayted inteferon and ribavirin for 48 weeks. They also test your blood usually at week #12 to see how you're responding to the treatment. If you don't have what they call a "two log" (decimal point) drop in 12 weeks, they usually stop treatment and classify you as a non-responder.
More progressive heptologists practice a more agressive, individualized treatment approach.
Individualized treatment can consist of a combination of higher doses of medication and/or longer (extended) treatment beyond the 48 weeks. It also usually involves more frequent blood tests and more agressive intervention for side effects. Especially the use of Procrit for anemia and Neupogen for low white blood cells.
As a geno 1, stage 3, you want an individualized approach.
Discuss this with your doctor and/or nurse practioner in advance.
Ask them how often they plan on testing your blood for the virus. At a minimum they should test at week 4, 12, 24 and every 3 months thereafter. Hopefully, your insurance (or yourself) can afford it. If not, do the best you can.
Also ask them what they plan to do if you don't have a two-log drop by week 12. What you want to hear is a back up plan like switching you to a stronger drug such as Infergen.
Also, ask how they plan to deal with side effect, especially anemia and low WBC. The answer you want to here is that they will be agressive with Procrit and Neupogen. What you don't want to hear is that they will reduce your medications. A reduction in medications lowers your odds of responding. Again, discuss this in advance with your medical team.
In my case, my doctors tested my viral load weekly until I was undectable at week #6. This is considered an early viral response (EVR) which generally means a shorter treatment period.
However, because of my genotype, stage, age (58) and sex (male) it was decided I would treat for 72 weeks. Two other doctors recommended 48 and 96 weeks respectively. It's still not a science and different opinions even among respected heptologists are to be expected.
That said, the minimum a type 1 should treat is 36 weeks after you clear the virus completely. But given your profile (unless you're a youngster :))I'd suggest at least 72 weeks if you can tolerate the side effects.
I've left a lot out but the basic idea is that you want to sit down with your medical team and discuss with them their strategy on beating down the virus. They won't necessarily use the same strategy that I (or others here may suggest. That's OK and even expected. But they should have a strategy that treats you as an individual and that you are comfortable with.
If all you hear is the cookie cutter approach, it's never too late for a second opinion.
I know it's a bit of info overload but you'll catch on quickly if motivated.
Again, you made a good decision to treat at just the right time.
Keep asking questions and keep us informed on how things go.
Jim
Hey, you'll be right behind me. I will take #3 on Friday.
In the biopsy, grade is the level of inflammation and stage is the level of fibrosis. Inflammation which is caused by the activity of the virus causes fibrosis. Fibrosis is scaring of the liver. You are in stage 3 and stage 4 is cirrhosis. According the the Janis7 websight ( which I poured over when I got my biopsy results) the median time (for about half the people) to progress from grade 3 to grade 4 is 18 months.
Inflammation starts in the portial triad and causes fibrois there first. This is where the arteries, veins, and bile ducts meet. From there the fibrois (scarring) starts to spread out into other areas. This is stage 2&3.
It sounds like you are starting to treat just in time. There are studies that show that both inflammation and fibrosis of stage/grade 3 can be reversed. I will be watching out for you. My sides are almost non-existent, by the way.
Kathy
In the biopsy, grade is the level of inflammation and stage is the level of fibrosis. Inflammation which is caused by the activity of the virus causes fibrosis. Fibrosis is scaring of the liver. You are in stage 3 and stage 4 is cirrhosis. According the the Janis7 websight ( which I poured over when I got my biopsy results) the median time (for about half the people) to progress from grade 3 to grade 4 is 18 months.
Inflammation starts in the portial triad and causes fibrois there first. This is where the arteries, veins, and bile ducts meet. From there the fibrois (scarring) starts to spread out into other areas. This is stage 2&3.
It sounds like you are starting to treat just in time. There are studies that show that both inflammation and fibrosis of stage/grade 3 can be reversed. I will be watching out for you. My sides are almost non-existent, by the way.
Kathy
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