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Posted 10/15/2010 9:12 AM (GMT 0)

I am 41 years old, I have had Hep C for 21 years.  I asked to be tested for Hep C last year when I had H-pylori and was undergoing tests for that.  I have always had normal LFT and FBC tests so doctor's would not have picked up on the Hep if I had not asked for the test.  I go for a biopsy in November to determine how much fibrosis my liver has.  When I find that out I will make my decision on when I am going to treat.  I have Geno 1 so I am in for the full 48 week treatment.

I have been reading this forum for quite a while and the urge grabbed me today to show myself and say hello :-)

Posted 10/15/2010 3:05 PM (GMT 0)
hello and welcome to the forum
Posted 10/15/2010 6:36 PM (GMT 0)

Hepmom, so glad you posted and introduced yourself and your situation.  I've had hep C for 41 years.  Are you aware that a new treatment is becoming available the first half of next year, which adds a 3rd drug?  It is having much better results (75% clearance) on those with 1a and 1b.  Initially, I was told that it only has to be taken for 24 weeks.  However, I've since heard 48 weeks if one is responding, to lessen the chance of relapse.  I will find out more when I see my hepatologist in Dec. and will post about it.  But it's something for you to keep in mind and perhaps wait for that treatment to become available.

Meanwhile, welcome to our family.  Enjoy posting!

Hugs,

Connie

Posted 10/15/2010 9:29 PM (GMT 0)
Hi Hep93,

Thanks for the warm welcome :-)

I do know all about the new treatments. I spend quite a bit of time online and have researched the treatments and Hep C.

If you have Cirrhosis and geno 1 on standard SOC treatment you should be doing 72 weeks. With the new treatments I imagine that someone with cirrhosis will not be given the option of 24 weeks because your chances of clearing the virus are lower than someone with fibrosis so you want to hit the virus with the drugs for a longer time. You will probably have to do the 48 weeks so that you have the best chance of clearing the virus and staying clear. If I had cirrhosis I would not consider a short treatment.  

If I have minimal damage I will be waiting for a new treatment regime to be approved but If it looks like being a few more years before they are approved I might jump in and do the treatments that are available now. I will know more after I have my biopsy.

There are many factors which affect your chances of clearing the virus such as high BMI, age, insulin resistance etc (there are a few more things but I won't bombard you with it all now). Age I can't do anything about but I have been losing weight so that when I treat I am at a healthy BMI and I have also been tested for insulin resistance which I do not have at the this point.

People with cirrhosis are more likely to have insulin resistance so it is worth checking out if you are thinking of doing the new treatments. You want to give yourself the best chance of success!

Are you going to wait for the new drugs if they are still a few years away?

Posted 10/15/2010 10:03 PM (GMT 0)

I'm not sure, hepmom.  I only did the interferon when I was first diagnosed in '93.  My white cell count dropped so low that I was taken off treatment.  I chose not to do the combo, but I developed cirrhosis and liver cancer (cancer free nearly 3 1/2 yrs. now.)  I have a friend who did treatment and mercifully it worked for her...but she went down to skin and bones and looked like she was dying.  I've had so many medical problems the past 8 yrs., I don't know that I want to put myself through that at my age (60s.)  I do know my viral load is 68,000 and my doc considers it not particularly aggressive.

Hugs,

Connie

Posted 10/15/2010 11:54 PM (GMT 0)

hep93 said...

I'm not sure, hepmom.  I only did the interferon when I was first diagnosed in '93.  My white cell count dropped so low that I was taken off treatment.  I chose not to do the combo, but I developed cirrhosis and liver cancer (cancer free nearly 3 1/2 yrs. now.)  I have a friend who did treatment and mercifully it worked for her...but she went down to skin and bones and looked like she was dying.  I've had so many medical problems the past 8 yrs., I don't know that I want to put myself through that at my age (60s.)  I do know my viral load is 68,000 and my doc considers it not particularly aggressive.

Hugs,

Connie

You have a nice low viral load. Of course the only time viral load matters is when you are treating. The chances of clearing are better with a lower viral load.  You can have a high viral load and no liver damage and a low viral load and cirrhosis.

It will be a big decision for you if you decide to retreat.  There are rescue drugs available if your Neutrophils drop during treatment to enable you to remain on treatment so that may help you this time.  I do agree though the treatment could be more complicated for you with your medical problems. Maybe that is why the doctors did not push you to treat after they treated the cancer?


Posted 10/16/2010 12:03 AM (GMT 0)
Because it wasn't particularly aggressive and I had 8 major surgeries in 7 yrs. (I just got past my first year without surgery in 8 yrs.) Also, I was the one that said I needed time to heal and just live without literally making myself sick. My hep doc did tell me about various drugs for side effects.

Hugs,
Connie
Posted 10/16/2010 1:43 AM (GMT 0)
I can't see how a doctor could say your Hep C is not aggressive, you have cirrhosis. It worries me when doctor's tell people not to worry about their hep C.

I can understand why you want your body to heal. Eight surgeries in 7 years is a lot for a body to handle! I hope you are feeling better now :)
Posted 10/16/2010 3:34 AM (GMT 0)

She didn't say not to worry about it.  Just made the comment that my hep C doesn't seem to be particularly aggressive.  Maybe she was basing that on my viral load and the rest of my labs or the fact that I've had C for 41 years and am still doing pretty well.  At any rate, she has never pushed me to do anything--it's always been up to me.  I do have blood work and an MRI at least every 6 mos. and sometimes more frequently.  I'm seen at Mayo.

Hugs,

Connie

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