Aa
Biopsy Results!!!
Finally!!! Finally got my results today. I have stage 2 fibrosis. So I guess that's not good, but not too bad either, right? She said I should start the treatment. Now I need to decide wether to go thru my insurance or do a study. Any suggestions?
by Hep_Free, 6 minutes
I used herbs from a naturopath/melecular biologist and he kept my load very, very low for decades and even brought below detection one year, but it's a mutating virus so he couldn't really ever make it go away permimentantly. I started this new triple Therapy five weeks ago (Incivek, Interferon, Ribavirin) and have an amazingly good experience but I've augmented the treatment with herbs, accupuncture and anti-depresents for three weeks preceding my treatment. I've found a slew of great solutions to the 'nightmare symptoms'. I started writing a journal and eventually posted it here Hep-Free.com. Both worlds can really help each other and I have my doctors total blessing.
I personally would be leery of joining a trial. By definition they need to try different protocols: give one group high doses, one low, and one placebo, etc.. You could waste six months and not even be getting treated OR you be getting too high a dosage and cause other damamge. I was afraid of Interferon for decades but the new mirical drug here is Incivek. It pinpoints genotype 1 and I was tested after only five days and I had ZERO viral load. Pretty amazing, and I have had nothing but distrust of big Pharma companies, but this is the real thing.
Best of luck to you.
I used herbs from a naturopath/melecular biologist and he kept my load very, very low for decades and even brought below detection one year, but it's a mutating virus so he couldn't really ever make it go away permimentantly. I started this new triple Therapy five weeks ago (Incivek, Interferon, Ribavirin) and have an amazingly good experience but I've augmented the treatment with herbs, accupuncture and anti-depresents for three weeks preceding my treatment. I've found a slew of great solutions to the 'nightmare symptoms'. I started writing a journal and eventually posted it here Hep-Free.com. Both worlds can really help each other and I have my doctors total blessing.
I personally would be leery of joining a trial. By definition they need to try different protocols: give one group high doses, one low, and one placebo, etc.. You could waste six months and not even be getting treated OR you be getting too high a dosage and cause other damamge. I was afraid of Interferon for decades but the new mirical drug here is Incivek. It pinpoints genotype 1 and I was tested after only five days and I had ZERO viral load. Pretty amazing, and I have had nothing but distrust of big Pharma companies, but this is the real thing.
Best of luck to you.
Finally! Ive been watching for your post! this is good news indeed with regard to damage and your age. Many of us older folks would live to turn back the clock to where you are.
Still, you have to make the big decision. I'm just happy that you still have many options. No advice here... Youve already had some excellent reaponses.
So many variables such as $$. Even w insurance, it hits the pocketbook hard. The trials aren't even offered to those w cirrhosis. Again, it makes me smile to know youre only at a 2.
Best of luck. Karen :)
Still, you have to make the big decision. I'm just happy that you still have many options. No advice here... Youve already had some excellent reaponses.
So many variables such as $$. Even w insurance, it hits the pocketbook hard. The trials aren't even offered to those w cirrhosis. Again, it makes me smile to know youre only at a 2.
Best of luck. Karen :)
F-2 is definitely good news. It means you have moderate fibrosis that has not yet become Cirrhosis. As willbb said, you have several options, a trial, wait, or treat now with an approved therapy. My husband and I talked about all of these options at different stages in his fight against Hep C over the past 4 years. I think his basic strategy as been (in order of preference): 1) treat if there is a treatment option, 2) get into a trial if he meets the criteria for one that looks good for him, and 3) wait for the next option if nothing else is available. So far, he has used every treatment option that has become available to him. He didn't meet the criteria for any trials that we have been aware of since his diagnosis. He waited after failed treatment #2 until the triple therapies became available to try treatment again. As willbb said, waiting is always an option, but we felt it was too big of a risk for him when there were other options for treatment available. He progressed from between f1-f2 to f4 between 2007-2010, so we have felt there is no time to lose. He is male, older than you are, and has probably had Hep C longer than you have, so these factors are in your favor. There are no herbal treatments or alternative medications that will get rid of Hep C virus. Best wishes as you move forward with your decision making.
Advocate1955
Advocate1955
Thank you for the kind remark summer,always nice to know someone is having a look,and as you know there are many here that give excellent advice and support.
Couple of things....I see from the other thread you mentioned having the IL28B test and you are a CC allele. That is kind of like hitting the jackpot in the gene pool when it comes to fighting HCV :0)
With that gene allele you have an excellent chance of success and it opens up some options for you.
Before I mention the options ..let me say that your friend who is treating her HCV with herbs quite frankly is doing "nothing to eradicate the virus ,therefore the virus is still actively damaging her liver. She may being having somewhat of an antioxidant effect and there is even controversy bout that ,however there is no controversy that herbs do anything to eradicate HCV virus. There is no data available that says even one person has been cured of HCV using herbs.
Please do not be confused about what she says because she is a friend,,she may be a nice person ,however she is totally misinformed.
Back to options. You may want to speak to your doctor about entering a trial that is recruiting patients that are using "no interferon". They are having good early results in these trials ,however always keeping in mind these are still experimental .
One option is to wait ..and treat down the road when these drugs get approved(however it still may be 3 to 5 years away),however keeping in mind that moderate damage can progress to more severe sometimes in that lengh of time(not always though)
Another Option is to treat now with the triple therapy ,possibly leaning towards the one the uses a lead in of INF /Riba for 4 weeks( victrelis) and if you have a good response(UND at week4) early because of the CC allele an option is to not even add the third drug as your chances of success are excellent without adding it.
All these options must be discussed at length with your doctor and weighed out moving forward.
Sorry for the long response and hope I have not confused things further..
Best..
Will
Couple of things....I see from the other thread you mentioned having the IL28B test and you are a CC allele. That is kind of like hitting the jackpot in the gene pool when it comes to fighting HCV :0)
With that gene allele you have an excellent chance of success and it opens up some options for you.
Before I mention the options ..let me say that your friend who is treating her HCV with herbs quite frankly is doing "nothing to eradicate the virus ,therefore the virus is still actively damaging her liver. She may being having somewhat of an antioxidant effect and there is even controversy bout that ,however there is no controversy that herbs do anything to eradicate HCV virus. There is no data available that says even one person has been cured of HCV using herbs.
Please do not be confused about what she says because she is a friend,,she may be a nice person ,however she is totally misinformed.
Back to options. You may want to speak to your doctor about entering a trial that is recruiting patients that are using "no interferon". They are having good early results in these trials ,however always keeping in mind these are still experimental .
One option is to wait ..and treat down the road when these drugs get approved(however it still may be 3 to 5 years away),however keeping in mind that moderate damage can progress to more severe sometimes in that lengh of time(not always though)
Another Option is to treat now with the triple therapy ,possibly leaning towards the one the uses a lead in of INF /Riba for 4 weeks( victrelis) and if you have a good response(UND at week4) early because of the CC allele an option is to not even add the third drug as your chances of success are excellent without adding it.
All these options must be discussed at length with your doctor and weighed out moving forward.
Sorry for the long response and hope I have not confused things further..
Best..
Will
I was hoping you would comment on my post! I love hearing your advice. I did that IL28B test when I got the biopsy. The nurse today said the result for that came back that i would have good results with treatment. So now I am waiting for a call from the study director to get more info on a study. I have a friend in California who has had hep c for years and refuses to use interferon. She says she uses all herbal treatments to keep the hep c under control. Said she recommends I do the same and to stay away from interferon. She is making me stress, Im so confused now, Have you heard of people treating hep c with alternative medicine and having good results?
Hi summer .Glad to hear you finally got your bx. results . The result means that you have moderate liver damage(fibrosis) according to the staging on the metavir scale.(below) The grading is the amount of inflammation going on ,however when it comes to you making a decision to treat ,the staging or amount of current damage is the most important factor.
Given the fact that you are fairly young and have moderate damage ,I believe the doctor gave you good advice ,to think seriously about treating now. It is a fact that the less severe the damage ,often the results of treatment are somewhat better,and again ,being young ,hopefully your health is relatively good ,which is also a benefit when treating.
As far as what to treat with ,that is always a personal decision,one made with the input from your doctor. There are pros and cons to both treating clinically with one of the approved triple therapys or volunteering for a drug trial.
The success rates are approx. 75%(depending on many factors) treating clinically and very often for 24 weeks,however there are some promising early results in many trials going on ,you may want to discuss with your doctor.
The Gene test you brought up in your other thread is the IL28B test ,that cyclist mentioned and I would agree with him that having this may be of some benefit going forward
Good luck going forward.....
Will
What Is a METAVIR Score?
The METAVIR score helps interpret a liver biopsy. When this biopsy is performed, doctors need a reliable way to quantify what is seen under the microscope. This scoring system assigns two standardized numbers: one to represent the degree of inflammation and the other the degree of fibrosis.
What Does My METAVIR Score Mean?
The fibrosis is graded on a 5-point scale from 0 to 4. The activity, which is the amount of inflammation (specifically, the intensity of necro-inflammatory lesions), is graded on a 4-point scale from A0 to A3.
Fibrosis score:
F0 = no fibrosis
F1 = portal fibrosis without septa
F2 = portal fibrosis with few septa
F3 = numerous septa without cirrhosis
F4 = cirrhosis
Activity score:
A0 = no activity
A1 = mild activity
A2 = moderate activity
A3 = severe activity
Given the fact that you are fairly young and have moderate damage ,I believe the doctor gave you good advice ,to think seriously about treating now. It is a fact that the less severe the damage ,often the results of treatment are somewhat better,and again ,being young ,hopefully your health is relatively good ,which is also a benefit when treating.
As far as what to treat with ,that is always a personal decision,one made with the input from your doctor. There are pros and cons to both treating clinically with one of the approved triple therapys or volunteering for a drug trial.
The success rates are approx. 75%(depending on many factors) treating clinically and very often for 24 weeks,however there are some promising early results in many trials going on ,you may want to discuss with your doctor.
The Gene test you brought up in your other thread is the IL28B test ,that cyclist mentioned and I would agree with him that having this may be of some benefit going forward
Good luck going forward.....
Will
What Is a METAVIR Score?
The METAVIR score helps interpret a liver biopsy. When this biopsy is performed, doctors need a reliable way to quantify what is seen under the microscope. This scoring system assigns two standardized numbers: one to represent the degree of inflammation and the other the degree of fibrosis.
What Does My METAVIR Score Mean?
The fibrosis is graded on a 5-point scale from 0 to 4. The activity, which is the amount of inflammation (specifically, the intensity of necro-inflammatory lesions), is graded on a 4-point scale from A0 to A3.
Fibrosis score:
F0 = no fibrosis
F1 = portal fibrosis without septa
F2 = portal fibrosis with few septa
F3 = numerous septa without cirrhosis
F4 = cirrhosis
Activity score:
A0 = no activity
A1 = mild activity
A2 = moderate activity
A3 = severe activity
You may wish to ask for a copy of your biopsy results and blood work and start a folder. It took a while for me to get it all straight. I swear the first doc i went to, the nurse practitioner told me cirrhosis which I do not have. It was good to have a copy to refer to.
No advice on trials though, sorry.
No advice on trials though, sorry.
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