Hey Joanne - I'm with you!  What I really dream of most is a life without Hep C -- including having to think or worry about it on any regular basis.  Doing a scan every six months means:  scheduling it, going to it, worrying about the results, getting the results.  Times twice a year?  That's just too much for me.  Maybe 1x yearly.  I recognize and accept the added risk in exchange for a better quality of life.  After all, this isn't only about living longer; it's also about living better. 

Hi again Jan, You are correct, the steatosis and fibrosis can disappear after SVR. I think we get a bit paranoid about our livers after all the trials of Rx. Followup is really up to the individual- I know I will want to check for HCC regularly.  Smokers have an increased risk of lung cancer, but how many smokers get an annual Chest XR. Again, all the best.

Hi Malcolm, thanks for your comments :) You are right about the fatty liver but I have read that with SVR this greatly improves, if not goes completely as it is the virus that caused it.  I agree with you a scan once a year would be a good idea and very reasuring.  Jan x 

Thanks so much for the support..

I do not know my genetic stats..requested this test but it was expensive to run.  Thought it would be worth paying for when/if the time comes to do treatment.

Hi Karen, It's Friday, one of my better weekdays. Thanks for the good wishes.

You do not have cirrhosis, probably F2 liver fibrosis, so you can afford to wait and see. My thoughts on HCC and followup are purely my personal views . Being cirrhotic, I have fewer options. I also have a yearly gastroscopy to check for esophageal varices, but this is a cirrhosis thing.

Do you know your genetic statis? If your Interleukin 28B gene variant is not CC, I would not consider any further interferon based treatment. With luck, interferon-free Rx is around the corner. I would sit tight, do as you are doing, stop worrying about your liver for a while, then wait to see what develops.  Best wishes.

Hi Malcolm, first I hope your spirits are soaring (at the least, slightly higher) from the other day;)

I would like to say that I am waiting for better options but...I am still not sure what I will do. Some of the reasons for considered the GS7977 trial were "timing" and reading the results on this forum.  The older I get the more I just want to live life!!! I take excellent care of myself and if I can remain reasonably healthy for another 15yrs, that is all I ask.  I would really be ok with that.  However, following the progression of my disease could be the changing factor...so hard to say..(heavy sigh!!!)  As for being aware of new developments-the people on this forum provide the best information around.  Love you guys and gals!!!

Test below:

2009 fibroscan  5.8 (this was a trial so they did not disclose what 5.8 meant but my doc said his was 7.2 and he did not have liver disease)

2011 fibrospect II  41 (f-1 - f-2)

2011 Viral load 9210000

2012 Ultrasound  looked good-no change

2012 AST/ALT 109/88

Hi Karen, I have read your posts and you have had a hell of a time. As you can't get on the GS7977 trial, I assume you are going to wait and see what develops over the next few years. Your GP may be able to manage you, but will he be aware of future trials and developments? If not, I would try to find a longterm Hepatologist.

After relapsing after 2 Double therapy courses, I sat and 'managed' for many years, with 6 monthly blood tests and liver imaging. I knew that VL and LFT's fluctuate widely, and really do not give an accurate picture of what's going on in the liver. I had one of the first Fibroscans (here) in 2007. This showed I had cirrhosis, so I stopped 'managing', and tried to get on the antiprotease trials. I was rejected because of cirrhosis, and the fact that I had only been treated with Interferon, not Peg-Interferon. Last Oct., my doc was one of the Hepatologists (inAust.) given access to Victrelis. It took until March for me to be accepted, so I'm lucky.

I can only suggest you assess your liver fibrosis Stage with a biopsy or Fibroscan. If F0 to F2, sit and wait to see what develops.

I find this post very interesting, confirming and somewhat disturbing.  Here in MI, we have what are considered two of the best hospitals (not in my opinion) in the country, U of M and Henry Ford.  I have meet with Directors of both Hepatology departments-They have agreed that if I am not willing to do the current treatment that there is no need for future visits..I found this to be very disconcerting, as I would like to know how the virus is progressing.

Can you please share any additional information on what I should request my General Doc to run on a semi or annual basis?  He WILL be willing to do this.  Currently I have an annual ultrasound and semi-annual blood panel (viral load-alt/ast etc.).  

Thanks for your help

Hi Jan, Congrats on your SVR. Great that you still drop in to the forum.

From your posts, I see that you were Geno 3 and had 24 weeks of double Rx. I could not see whether you had a preTx biopsy or fibroscan.

Geno3 is traditionally associated with increased steatosis and risk of HCC, and cirrhosis tends to develop more rapidly. The risk of HCC increases proportional to the degree of liver fibrosis, so if you were Fibrosis Stage 0 or 1, there is still an increased risk of HCC, but nothing like that of an F 4. I personally would have followup screenings, but ask your Hepatologist for his advice. Best wishes- great to hear another success story!

Hi everyone, I achieved SVR 2 years ago now and was discharged from the hosital this May.  I have no on going checks, no ultrasound. no fibroscan no nothing.  I was told that my liver was "back to normal" and that was that.  Maybe I should ask for a scan every year through my GP if thats possible.  I would appreciate your views on this.

Many thanks, Jan x

Hi JoAnne, Unfortunately all patients with chronic HCV have an increased risk of HCC. This risk is greater depending on your level of fibrosis, becoming greater in cirrhotics. This is why I advocate getting a baseline liver biopsy ( or at least a Fibroscan) before treatment.

Achieving SVR greatly reduces the risk of HCC, in all fibrosis grades. As only about 50% of HCC's produce AFP, this is not a reliable test. Liver imaging is required, with a 6-12 month ultrasound the usual test. This should identify tumours down to 10 mms in size. Better detail is obtained from a contrast CT or MRI.

So, sorry, regular imaging will be required, even with SVR.

JoAnne,

I hope that I will be able to get a regularly scheduled ultrasound post tx for the rest of my life, if need be. If I end up with liver cancer and need a transplant, I will be greatful if a donor liver is secured- I'll do what ever I can to survive.