I was in the trial for combo therapy (interferon / riba) in '96 at Mayo Clinic. It literally saved my life. It was also an awful experience. And "chemo fog" was a factor with brain functions then. May have lost a memory or two - but I have also had a great time with my son and family that looked rather bleak 12 years ago .....its only normal to be afraid of the unknown....get it done before the liver damage progresses...
Even if you chose SOC you would likely have the Jitters. Try to keep your chin up, you are in for a bit of a journey, get outside and enjoy the fall air while you can.
Thanks to people for responding so quickly.
No doubt I AM having jitters to a degree.
I can tell you something that may explain why I feel this 'jumped on me'
I was actually contemplating the Standard Interferon treatment, because I was working from home as a web designer and I no longer have my live in girlfriend, plus, I had the support of my family financially in case the treatment caused me not to make enough money to support myself. Also, and luckily, I happen to be in France (although I'm American) and with the Socialized medicine, the complete treatment course, including meds, etc. is all 100% free.
It seemed that if there was going to be a time to be down and out for the greater good, it would be under these circumstances. However, both my Psychiatrist and my Liver specialist agreed that I should get my body and mind 100%, as I had battled with depression recently, and I wasn't in good shape. So I set about trying to get myself in order, lost 30lbs and was planning on starting Interferon treatment in about 4 months, which is when my doctors and I projected I would have myself 'at the best point' to begin treatment.
But I was suddenly offered the telaprevir trial and told it would be the difference between 58% and 88% success and it would also be 6 months vs 1 year.
I thought I was simply lucky and shouldn't say no to something many people prayed for.
However, the Dr. just told me that far from stage 3 or 4, that I had an almost healthy liver, so rushing into this may have been something that someone who really needs this treatment NOW and honestly can't wait till there are open trials and better data on how to deal with things like adverse reactions.
Basically I know that I do have jitters and I can't say much after only 1 day on the program ( I haven't even taken the telaprevir/placebo pills yet)
So I want to thank people for responding once again, and please, if you have any objective or subjective info on cognitive impairment, especially that continues after treatment, please leave a comment.
Sincere thanks
Although I have not gone back to re-read the trial protocols and arm breakdowns, I'd think that 1/3 placebo was kinda high.
Vertex promises around 60% SVR in 24 weeks as compared to around 40% SVR in 48 weeks for genotype 1's. So as you can see there is a big difference here, assuming you do not get the placebo.
As to lasting cognitive impairment, yes, a number of people have posted that experience although it does seem a very small minority, but I have no doubt that it happens. During tx is another story and most have "brain fog" or similar from the drugs.
I have no idea about your history or liver status, so really can't comment on whether treatment was the right choice for you. And in fact, there is no such thing as the "right choice" because that really depends on how you as an individual processes the risks versus rewards per you own research and consultation with your doctors.
Personally, if a friend of mine had Hep C, I'd advise against treatment at this point in time unless they had signficicant liver damage -- meaning stage 3 or 4. I'd tell them to wait until the Vertex trials are over so they won't have the placebo issue to deal with plus they will have a whole lot more trial data to look at. Others here, would tell you to treat early and be happy you got into a trial with what appears to be the most promising drug being tested. Again, no right or wrong answers, it really comes down to how you feel about all this.
-- Jim
It sounds like the jitters to me. Even after I started, I'd agonize about whether I'd made the right choice. In the end, it felt like all I really did was flip a coin and here I am, in treatment, having started off with only a 50% chance, the very arm that you hope you're not in. There was no urgency other than my advancing age to make the plunge and I'll never exactly know if it was the right choice. Now that I'm in the middle of it, I have no regrets. I'm not quitting now that I've started, odds or not, and can face the future whatever the outcome (after any requisite mourning).