Faced with a decision

[Janet_S]

I have had hep C for 14 years.  I decided not to treat because I also had breast cancer and the treatment was horrible.  I have been just watching diet and taking Chinese herbs.  My first biopsy was 7 years ago and the doctor said my inflammation was high but the scarring was (1).  Yesterday I received the results from my second biopsy and he said the inflammation was low but now I am stage 3 with the scarring.  I know by reading older posts that I am not explaining this like others do because I really don't understand it.  I am sure my doctor would have answered my questions if I knew which ones to ask.
Anyway now there is a new drug and he is recommending treatment.  He thinks the FDA will be approving it by June.  I am just trying to understand all of this and am thinking I should now take the treatment.

[Janet_S]

Thanks Bill, I printed the acronyms.

[Janet_S]

Thank you guys again.  My genotype is 1A.  What dies tx stand for?  I am assuming it is the treatment itself.  Last night on the phone my doctor mentioned getting into the clinical trial to start earlier than waiting for the FDA approval.  How does that work?  I have a call back into him to ask some of these questions.  I have decided to go ahead with the treatment and am preparing myself for the side effects.  With my chemo, I was forced to bed for 4 days after a treatment with a bucket.  I also would get an incredible migraine and my husband would take me to the hospital for a shot of Demerol. I would be just starting to feel better when the next treatment came along.  I am a wedding photographer with my busy season coming up and just can't afford to not be spot on.  It is wrong to think about starting the treatment in Sept when I have my slow months ahead of me?  Or, is that a risk and I should just put my big girl panties on and get started?

[nygirl7]

This should be nothing in comparison - while we like to 'call' it chemo because it's easier for people to understand...it is NOT like what I am sure you went through.

At stage 3 though you are going to have to address the situation head on.  I was a stage 3 too (not sure what I am now) and knew it meant it was time to do it before I was out of healthy liver tissue and it becamse way harder to get to SVR.

Good luck I am sure for you this will be comparably a piece of cake so dont worry too much about it. NOT the same thing!

[James10500]

I've never had cancer, but I know a few people that have, Aunts,my brother, and two friends.  Anyway my feeling is that although HCV treatment isn't "fun"  it's nothing compared to the chemo cancer patients take.  I am stage 3 as well and treated right away starting in the summer of 2010, I was (am) one of the lucky ones a type 2b.  Your Genotype will play a major role in decision making from here.  Good luck to you and welcome.

[Bill1954]

Hi Janet,

Welcome to the discussion group. You’ll see an alphabet soup of abbreviations and acronyms used in here; this is a directory to help you understand what’s what:

http://www.medhelp.org/health_pages/Hepatitis/Common-Hepatitis-C-Acronyms/show/3?cid=64

This is also available in the lower right hand side of the main forum page in a box titled, ‘most viewed health pages’.

This is an overview of new HCV drugs in various stages of clinical trial:

http://www.hcvdrugs.com/

although I believe it hasn’t been updated since August, ’10.

Many of us have treated our HCV successfully, although some of us had to do it more than once to get it right. I treated twice with genotype 1, and have been virus free since August, ’08.

Good luck; continue to read and ask questions, and the folks here will share their experiences with you. Take care--

-Bill

[Janet_S]

Thank you all.  Glad I joined the group.

[Trinity4]

I'm still under the impression that only RVR allows for shorter treatment duration with the PI's.   We really don't know what the protocol will be at this point.

[copyman]

Hi and welcome. Yes you should consider treatment now that you have progressed to  stage 3. You want to stop the fibrosis now before you advance to stage 4 which is cirrhosis. Once you advance to stage 4 it starts to limit options with treating, etc. Cirrhosis also increases chance of liver cancer. Your doctor is correct there are new drugs coming out this year. The timing is right to start treatment with these new drugs. Best of luck

[willbb]

As lapis has  stated with stage3 fib(moderate) it is time to seriously consider tx. Your doctor is correct in mentioning that new meds are coming out in the near future,probably sometime in the mid-year to treat more effectively Geno typy 1. The tx. time may be shortened  and the efficacy rates may increase from the current 45 -50% to somewhere in the 70 -75%  given the latest trial results.

Hope that helps some...and ask any questions here you may think of to take to your DR.

WILL

[lapis]

Hi Janet, and welcome to the forum.  Yes, from your description of your biopsy results, your liver damage is progressing, and it is wise to be at least considering tx now.  I will tell you that I treated with the new drug regimen as a clinical trial participant, and it is do-able.  No picnic, but certainly do-able.  Since you have had the chemo experience, you may have already developed some strategies for dealing with the sides of tx.

Do you know your genotype?  Since your doc is referencing the new drugs, you must be a geno 1.  Usually geno 1's treat for 48 weeks, but with the new meds added, my tx was only 24 weeks.  This is a huge benefit, to have less exposure to the potent mix of meds required.  Also, the rate of successful tx goes up significantly (don't have those stats but I'm sure someone will chime in).  I will soon have my 2-yr post-tx labs, but so far I've been undetected since tx ended.

Glad to answer any other questions you might have.  Best wishes to you.

Lapis