Thank you so much for the information, I'm so grateful for all your help. It's very confusing going from dr to dr, not knowing which one actually is giving you the correct information, until putting all the dr's comments together and having to do my own research in an effort to try and become the most educated possible with this disease and the treatments. Yes, I have felt uncomfortable with what we've been told so far, and do agree with you HectorSF about going to a hepatologist experienced with treating patients with stage 4 liver disease. There's a hepatologist I've tried to get him into who has a 3 month waiting list for appts. That's been a concern. I made the appt, but it's not until Mar. And we continue to get letters in the mail that the appt is rescheduled. Two letters later, it is two weeks even later than the the initial appt. March is too far away. So that is one of our dilemas. I’m so thankful for this forum, and you are all amazing people to be on here helping others.
In your other thread you mentioned that your husband had a partial response but you were not specific about what he response was. This is important in determining his odds with one of these triple therapies, especially how much his viral load dropped at week 4 from start of treatment and if he ever became und.
Your husband's disease progression may just mean that it is time to treat even with low odds as it will not get better on it's own. You've received very good advice from people with advanced disease including one who's husband has liver cancer that has metastasized (Eureka) and Hector who also has liver cancer as a result of their advanced disease.
Best of luck,
Dave
Amen Hector, good to see you back. Hope everything turned out well for you at the Hospital.
At Clinical Care Options-http://www.clinicaloptions.com/
There is a good read on "Resistance in Hepatitis C". Free registration required.
I, too, have cirrhosis and have failed other treatments....or rather they have failed me. It is my understanding that Incivek has been studied in cirrhotic patients although not in large numbers. We know the cure rates for cirrhotic people are lower than for those without cirrhosis but I don't think that is a reason not to try. If resistance occurs, it takes up to 2 years to go away in people with genotype 1a and less time in geno 1b patients. But if it fails it wouldn't matter because you wouldn;'t want to try a protease inhibitor again anyway. Personally I am waiting for better odds with one of the polymerase inhibitors, ribavirin and no interferon. I din't try one of the new drugs because as acirrhotic with prior null response, my chances for cure were only about 13%. I also can't take interferon again as it totally wipes out my white count.
I wish your husband well..
First of all if your husband has cirrhosis of any degree treated by a he should be e hepatologist preferable at a liver transplant center.
If you are conveying what this doctor really said than this doctor should not be treating anyone as his/her statements about treatment shows that they have no knowledge of the basic facts of treatment.
"Although this drug is not studied with people who have cirrhosis"
This statement is false. Cirrhotics were treated with both new antivirals.
"My husband is further along with his cirrhosis but the dr feels that people can beat the odds and defy many times what medical science may not have proven to work. "
What does "further along with cirrhosis mean"? Decompensated?
Your husband needs to treat with 48 weeks of treatment to have the best chance of cure. That is a well know fact. If the doctor said 12 weeks maybe he meet with the antiviral drug for 12 weeks and 36 weeks in addition with interferon and ribavirin?
So the first step is to get him to a hepatologist who is experienced with treating patients with stage 4 liver disease. This doctor appears to be so ignorant of basic fact your husband will fail treatment with him and may develop resistance. Not a good thing when a cirrhotic could be running out of time to treat.A hepatologist will have a real diagnosis of your husbands condition and know if treatment is appropriate for your husband. So get a referral to see a real liver specialist and your husband will have the best odds of curing his hep C.
Good luck.
Hector
Here are links to both incivek and victrelis full prescribing info lots of good info on both drugs.
http://pi.vrtx.com/files/uspi_telaprevir.pdf
http://www.merck.com/product/usa/pi_circulars/v/victrelis/victrelis_pi.pdf
For people with cirrhosis recommended treatment lenght for both incivek and victrelis is 48 wks, they are both the same kind of drug (protease inhibitor) but dosed differently. Cure = SVR = no detectable virus 6 months post treatment. resistance issue's are still being studied and I don't think there is much concrete data yet but if I am wrong someone else will chime in and let you know for sure. With cirrhosis IMO resistance issue's are no reason to not try and treat, the sooner the virus is stopped the sooner the damage to the liver being caused by the virus is stopped. Good luck in whatever decision you make and wishing the best moving foward.