Knowing what I know now

[cyclegal]

I wish that I had known the knock on effect the treatment would have on me in the following years. I don't feel I was told about any lingering side effects of interferon/ribavirin treatment. I was told about the side effects that may occur during the actual treatment but not that there would be lingering, permanent damage caused by the treatment.

I know I have cirrhosis and have to have regular ultrasound scans on my liver as it makes me susceptible to liver cancer but it's not something I think about but a few weeks ago a lady on a Facebook page set up as a support group for Hep C sufferers that contracted the virus via blood transfusion, died. She had been talking to me on and off for a few years and then was told after a routine scan that there was something there and then that it was a cancer and quite literally, died a week after. I was very shocked and sad and it brought it home to me that it can and does happen.

I know that if I had to do it all again I would be far more demanding of answers and wouldn't be so accepting of everything although I have no complaints about the treatment I received but it was 11 years ago and obviously more has come to light since then and treatments seem to have improved.

[Sillysausage234]

Good that your having regular scans now ...

[Hidden]

The thing is when you and I (couple years before) got combo there was no other treatment. It was rationed then in some areas. I had probably had hcv almost 30 years. I watched online people disappear due to it. I was a member of a forum where I spent countless hours researching and being advised by mainly people in the US.My greatest support came from a woman who lived with her husband I believe in Arizona on a former ranch. She died. I have known many online end up the same.

In those days if you were geno1 which many are in the US you had a reduced chance of clearing/ sustaining a viral response. I couldnt get treatment but by the grace of god I got selected for a one year study trial. Most here did 6 months. So you can understand how it hit me. My wife and kids had to lift me out of a chair.

But I had cirhosis and was mostly compensated. By the time I completed with a svr I had hcc and was immediately put on tx listing under priority.

I would do it again as I wouldnt have made it otherwise. These new meds from what I gather are a breeze in comparison. With 95% rate including better results for geno 1. I strongly advise all to fight for the new treatments.The earlier the better.

Remember if you end up having a tx due to hcc which could still develop, its not a given that with long term immune supression it wont comeback.

I would like to know if these new meds have been used for post operative reoccurence in any cases yet??

It is so important that you are regularly checked as Alan234 has said.

[cyclegal in reply to Hidden]

Whst is hcc?

[Hidden in reply to cyclegal]

Hepatocellular carcinoma. Or tumor