Newly diagnosed

[dena121059]

Hi everyone.  I was diagnosed with Hep C and cirrhosis a couple of months ago.  I start treatment Dec. 18th.  I have heard all kinds of stories about the treatment.  Mostly bad stories.  I am a genotype 2, so I was told that 6 months is all I would have to do.  Also, I was told I have stage 4 liver disease.  I have not had a biopsy done, the doc said that they could tell by my blood work that I was stage 4.  In December, when I start treatment, I am going to have an ultra sound done to check for liver cancer.  The doctor said I would need one every 6 months for the rest of my life.

I am curious about what many of you experienced while on treatment, and living with this kind of diagnosis.

Thank you!

[dena121059]

Thanks for the the responses.  I am being seen at The Liver Institute in Dallas because I don't have insurance.  I think one of the reasons for not doing the biopsy is the cost.  The doctor that is managing my case said that they know I'm stage 4 because my platelet count is so low.  (low 80's)  

I have been an alcoholic since my teenage years, so I am having a hard time dealing with the fact that I can't drink anymore.  Going through a lot of anxiety.  

I know I will make it through this.  I am just now begining to get over the shock about the Hep C and cirrhosis diagnosis.

Thanks again.  I'm sure y'all will hear from me often!

Dena

[Andiamo1]

I treated 8 times until I finally beat this disease.  The treatment varies with quite a range from feeling a little out of sorts to being seriously ill. I think most people find it unpleasant, but tolerable.

It is always good to get a second opinion.  It is also important to see a hepatologist, not just a GI specialist.  Most large medical centers have hepatologists on staff, so they are not that hard to find.

There are many new drugs in late stage FDA trials, but unfortunately, none available in the next year.

Best of luck to you.  You will find lots of people here that can relate to your experience and offer support.

Eric

Best of luck to you.

[Megan5515]

Once you have cirrhosis, I think the reason that they are hesitant to do biopsies may be because of the cancer risk.  I am also stage 4, and because they already know that, they are choosing not to do biopsies.  There is a chance of needle tracking with a biopsy, where if you did have cancer it could spread the cancer throughout the tissues while being removed.  Get your ultrasound and keep an eye on your AFP's.  If either are abnormal, sometimes MRI can be more effective.  If you think you need a different doctor, there are a lot of good ones out there.

About the treatment.  It can be "that bad" and it varies for everyone.  Some people tolerate it better than others, everyone's body is different.  I think you have to look at it like this- if there is a chance of SVR, even if it is horrible, isn't it worth it?  I have treated unsuccessfully 3 times and every time I say I won't do it again.  But really, how can I say no to a chance at a life without Hep C?

Anyways, I wish you all the best.  Good luck to you and your health.  :)

[l-horn]

Have a biopsy. You can't tell liver stage with a blood test. 2nd, get a new doctor, seriously.

About the treatment. It's not that bad. If it were, no one would do it.