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Cinnamon Girl


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Hi Jeanne, that`s great, genotype 2 is one of the easiest to treat and you should respond very well to the standard treatment.

Keep us posted!  smile



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
MamaLlama


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hey all. I talked the dr and they said I have hep c 2b soo what does that mean?



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nurschic


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Welcome Jeanne! A new Dx of Hep C is very confusing and sometime all the information out there can make your head spin. You have found a great support group here that can shed light on your Dx, treatment options and side effect help without feeling like your head is going to explode! I know that I am very blessed to have found the site! Keep us informed and ask questions....everyone here is more then willing to share information.



__________________

Dx:2007; Genotype 1; VL 1.4mil, start triple therapy (peg/rib/inc) 6/2/13 (Failed), Harvoni 12 weeks EOT undetected, 6 month EOT UNDETECTED!
Biggyb


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Welcome Jeanne, we have a good group of people here. Keep us informed.



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58 yo..Relapsed in 99 and again in 2004. Started triple therapy with Victrelis July 22,2012.  genotype 1a. week 8,12,16,24 VL Undetectable..E.O.T -- 6-22-2013,,,EOT + 24., UND. 

SVR !!!

 

~Bob~
MamaLlama


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Oh and no they never suggested it..Im gonna call tomorrow and ask some more questions



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MamaLlama


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My goodness you've been so helpful! I cant thank you enough!



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Cinnamon Girl


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Yes, Jerry is right, the IL28B gene is part of your own genetic make-up, whereas the Hep C genotype refers to the particular strain of the virus you`re infected with.   The most common genotypes are 1, 2, and 3, (with subgroups `a` or `b`). 

Peg-interferon and ribavirin is still the standard tx (treatment) for genotypes 2 and 3, which is why I asked.   If you look around the forum you`ll see that a lot of our members have genotype 1 and are doing the newer `triple therapy` treatments (the standard double tx plus another drug which is either `victrelis` or `incivek`).

There are new `interferon-free` all-oral drug therapies in the pipeline which are likely to be easier and more effective, with a shorter course of tx, although at your age with genotype 2 or 3 you`re likely to respond very well to the standard tx.  I had genotype 3a and did my tx when I was in my early 60`s, and I responded very well and cleared the virus, even though I`d been infected for at least 35 years.  I`m now considered `cured`.  smile

 



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
MamaLlama


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Jerry is it? Thank you so much this has helped so much! We did a Fibraspec test and Im currently seeing a GI dr now. Who has come highly recommended so thats helpful.

The nurse told me the genotype is tc? Thats all I really know. July 18th is when my dr and I will be meeting for more information.



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MamaLlama


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Vern- they said I have minimal scarring on my liver. Thank you for the information!

Jill- Im very active & lift weights a lot but also my job is very physically demanding and long hours. I work 2 weeks then I'm home for 2 weeks. I've read that if youre fit and stay active the fatigue and weakness wont hit you as hard..but like I've heard everywhere, EVERYONE is different haha. I dont see my dr for a month to discuss treatments...Also I've recently confided in my sister who is a nurse and she said the hep c is not curable..but my dr said if my body works favorably with treatments then I'll be clear of it completely..true?



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Cinnamon Girl


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Hi Jeanne, welcome!   As Vern said, the side-effects from the peg and ribavirin treatment do vary quite a lot from person to person but most people find it manageable, and many people are able to continue working full time throughout their treatment.  There are some people who sail through it fairly easily whereas others find it more of a struggle, and most people experience at least some degree of fatigue and moodiness. 

Depending on your circumstances you might need to adjust your daily activities to take in extra time for rest and relaxation, especially for the first couple of days after the injection, which is why most people find it best to do their shots on a Friday night.

You`re young so it could be that you can afford to wait for easier and more effective treatments to be available, but best of luck with whatever you do.  Be guided by your doctor and how you feel.

You`ll find loads of info and experience here from people who`ve done the treatment themselves, and you`ll get all the support you need if you stay around.  Feel free to ask any questions!  ~ Jill

 



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
12Step Guy


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Jeanne, has your Doctor done a biopsy to confirm cirrhosis or other liver changes? I think most folks use this as an indicator of how soon to start treatment. There is no getting around having some side-effects from peg-interferon & ribavirin. But each of us experiences the severity or lack of differently. There is quite a bit of information on the forum and in previous posts. So, some homework is needed.  From what I understand those with a CC genotype respond the best, then CT and lastly TT. 

Hep C is usually very slow-acting. There should be better HepC drugs coming. The problem with peg-interferon & ribavirin is that there doesn't seem to be away to determine who is resistant without doing the drugs for 6 months and then relapsing. If the new drugs have a much lower across the board failure rate; I'd be tempted to try them first.

Vern



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Genotype 1a, IL 28 = CT  Interferon and riba 48 wks in 99, Daily Peg and Riba 18 months in 2007, Started Incivek, Peg, Riba 6/21/12. 4th stage cirrhosis. Last Dart will be May 23 2013.
Dillo


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MamaLlama wrote:

Jerry is it? Thank you so much this has helped so much! We did a Fibraspec test and Im currently seeing a GI dr now. Who has come highly recommended so thats helpful.

The nurse told me the genotype is tc? Thats all I really know. July 18th is when my dr and I will be meeting for more information.

 Any reason they didn't do a biopsy? I had the Fibraspec because I am on plavix (which means I'm a easy bleeder) and I hear they are highly inaccurate. I talked to someone  in another forum who had the same test and got the same result as me F2-F4 which means significant fibrosis but they went back and got a biopsy and got a F0 which means no scaring.

I think your talking about the IL28B gene with the c/t. Thats a gene type you already had in your body and is more significant if you have Hep C  geno 1 or 4.  The genotype of the Hep C you have is usually 1 through 6 with a sub type of a  through even j in some genotypes. Like 1a 2b or 3a.

They suggesting interferon and ribavirin I would guess you might have a type 3. That is the only approved type treatment for it as yet. Better ones to come within a year or so I believe though.

Liver Biopsy link

IL28B Genotype Link

Different types of Hep C link

Lots of other information about all of this on the internet with keyword searches in most all search engines.

Good luck!

 

 

 



-- Edited by Dillo on Thursday 6th of June 2013 03:16:28 AM



-- Edited by Dillo on Thursday 6th of June 2013 03:16:44 AM

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GT 1a Started triple tx with Incivek, Pegasys, and Riba 2-6-2013. UND at 4,6,12,23,& 24 wks EOT 7-26-2013. Probably had Hep C for 20-30 years. Don't really know when I got it.

MamaLlama


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Just received info that I have Hep C IL28b genotype t/c. My dr wants to start treatment of peg-interferon & ribavirin. They said I should be clear of it in 6 months..Any thoughts? I've read conflicting studies about it. Any suggestions on how to deal with this would be great. I have also read awful side effects about both medicines. What have most of you experience?



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Dillo


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Hi ML

Welcome. Like Jill said your young and usually Hep c takes some time to cause scaring in your liver. Lots of people here me included have had it for over 20 years before liver damage was noted. Question was how did they determine the scaring in your liver? Biopsy (sticking a needle in your liver to get a sample) Sonogram, or Fibraspec (blood test). Some methods are much more accurate than others. The treatment of peg-interferon & ribavirin is a very old treatment. According to what your IL28B gene is you could have a successful treatment or not. There are newer treatments coming out in a year or two. Most of those won't involve interferon and they say have a lot less side effects and it looks like they may be a lot more successful.

I suggest you relax a bit and try to learn as much as you can about the condition of your liver so you know if it is critical you treat now or if you can wait. Also best to be going to a hepatologist instead of just a medical doctor or GI doctor if you can find one in your area. Good also to know what geno type your hep is 1a, 1b, 2, 3 etc. That also determines what kind of treatment you will need.



-- Edited by Dillo on Thursday 6th of June 2013 12:41:25 AM

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GT 1a Started triple tx with Incivek, Pegasys, and Riba 2-6-2013. UND at 4,6,12,23,& 24 wks EOT 7-26-2013. Probably had Hep C for 20-30 years. Don't really know when I got it.

Cinnamon Girl


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Yes, Hep C can be cured, as near as we can say!  Your doctor is right, as long as you respond well and the virus is no longer detectable in your blood stream by the end of your treatment, and still undetectable 6 months after treatment has ended, that`s called SVR (sustained virologic response) and you`re considered cured. 

The fact that you`re fit and strong will definitely be an advantage, and if you are able to keep active on treatment then it helps as lot, physically and mentally.  

You`ve told us about your IL28b genotype, but do you know what your Hep C genotype is?  As you say you`ll be doing peg-interferon and ribavirin, do you have genotype 2 or 3?

 



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
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