
Hepatitis C Support Group
Hepatitis C is a blood-borne viral disease which can cause liver inflammation, fibrosis, cirrhosis and liver cancer. The hepatitis C virus (HCV) is spread by blood-to-blood contact with an infected person's blood. Many people with HCV infection have no symptoms and are unaware of the need to seek treatment. Hepatitis C infects an estimated 150-200 million people worldwide.

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I geno-type 1b, currently on week 23 of the combo of pegasys and ribavirin the Friday will be shot 24. I became undectable of the virus at week 3 so I had a rvs (rapid virological reponse). However I've been suffering from low red blood levels since about week 6, and they have steadily been climbing lower. On top of that, the idea that ribavirin can cause cancer has been weighing heavy on my mind, and I know the longer I take it the more chance of cancer. I'm starting to feel like, since I have cleared the virus at this point, if I could be trading one evil for another. I know I'm not guaranteed to stay virus free so I did some research, and the latest studies are indicating that type 1a and 1b are showing that if they have an rvr clearing at week 4 (and I cleared at 3) that they have an overall 89% chance of obtaining an SVR (never getting the virus back) if treatment is stopped at 24 weeks and these odd aren't improved if treatment is extended to the 48th week. http://www.natap.org/2005/AASLD/aasld_55.htm Remember this is only for people who cleared the virus by week 4.
Now, the temptation to stop treatment all together came about with these findings, but I remembered these are just preliminary findings amd more studies are being conducted. So I thought of perhaps a compromise and thought maybe continue the pegasys till week 48 but discontinue the ribavirin at week 24. I will talk to my tx dr first, of course, but I was already told they will do what ever I want as to treatment at this point last month, including stopping the treatment all together. This way I stop the risk of cancer now, and will also help raise my blood count without the need of a blood transfusion or use of even nastier medications. Two problems solved at once without taking the complete risk of stopping the total treatment. Any thoughts are most helpful on this, since I'm still so unsure.
Now, the temptation to stop treatment all together came about with these findings, but I remembered these are just preliminary findings amd more studies are being conducted. So I thought of perhaps a compromise and thought maybe continue the pegasys till week 48 but discontinue the ribavirin at week 24. I will talk to my tx dr first, of course, but I was already told they will do what ever I want as to treatment at this point last month, including stopping the treatment all together. This way I stop the risk of cancer now, and will also help raise my blood count without the need of a blood transfusion or use of even nastier medications. Two problems solved at once without taking the complete risk of stopping the total treatment. Any thoughts are most helpful on this, since I'm still so unsure.
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Any way you shake this out, even if a person has minimal sides, or strong side effects, this is tough. It is the uncertainty, the no quarantee, or the waiting. Big hugs to you, and I hope you find the answers, and the solutions that work for you, hugs.
Don't get me wrong; I am most certainly not judging in any way. But here's how I see it all.
From the get go, tx is a crap shoot. There are all sorts of odds and percentages and numbers flying all over from every Tom Dick and Harry's findings and studies. Does anybody really truly know what to believe?
It's up to you if you want to roll that dice again, quit early, and hope that you don't relapse. It's your call but I sure would want to go the safe route, especially being a type 1, and go right to the end of the 48 weeks. At a minimum, I would think it would be safer to do at least 36 weeks after the week you tested cleared.
That 36 weeks is important. The standard of testing for clear at 12weeks then continuing for another 36 weeks is for a reason; play it safe and stick to it.
I don't think there is a single person who has done tx who can honestly say it's not really hard on a person. After doing tx once, there is definitely not a single person who really wants to go through all that grief again if they relapse.
I am a type 1a, did tx, cleared but relapsed post tx. I did not have a hard time at all but I am looking at reasons to put off doing tx again. Like I am old and have no damage, so do I really need to go through it all again? I likely will do tx again, but man, I sure don't want to! Do you want to gamble, hoping that you are part of that 89% and not the 11% who relapse?
Moving on to part of tx as a possible cause of cancer. I get weary whenever I hear those words. These days what does NOT cause cancer? It's your call again, but if you don't get rid of the virus and it progresses on you, you could end up with liver cancer, so you're damned if you do and damned if you don't.
My grandmother passed of liver cancer, and it's not pretty. I think I'll take my chances and do tx.
I think what you should do is write down each and every one of your concerns, then sit down with your dr and talk them all over.
Your dr may have something to say to put some of your concerns to rest or even have some solutions and suggestions for you.
I don't know as if I'm rationalizing, maybe I am, it seems I don't know how I feel sometimes with my head so cloudy and all if seem to feel is tired. I just was so freaked out about when I was first diagnosed with hep c that it never occured to me to really think about the long term side effects of treatment after I'm done until now. I just brushed it all off as nothing could be worse than having hep c. I didn't find this board, or anyone who finished the treatment until I already started treatment, and listening to problems others deal with post treatment I just want to make sure I do everything I can to not only live a long life, but a long healthy one. But I really don't want to risk relapse either. You all have made me realize what I really need to do because you've said it. I finally need to have the conversation of the long term risks of treatment in my personal case. I think I feel silly doing it now though, but it seems alot of newly diagnosed people felt like I did at the time so I maybe it's not the first time someone felt this way halfway through. I just know I'm terrified at the idea of a blood transfusion because of my low red blood cells, because I had two of them in 2002 after I died having my daughter when blood was "suppose" to be safe and it's my biggest risk factor for the possibility of getting this disease. I don't know if anyone ever feels good about redoing something that made them sick in the first place.
It's a catch 22; you stay on treatment and you might get cancer from the pills; you stop treatment the HCV comes back and can develope into liver cancer. Sweetie what ever you decide to do, we're here to support you!