Aa
regrets?
Is there anyone here who regrets being in a trial? Just curious.
In the final analysis, it has to do with the efficacy of the drug for your particular infection and your particular biology. If you are looking for a sure thing, it ain't gonna happen. You pays your money, you takes your chances.
What about being in a trial do you regret?
I've been in one clinical trial and two treatments with FDA-approved drugs. The only bad thing about the trial was I had to go exactly by the trial's protocol, and when my viral load wasn't low enough, I got kicked out of the trial.
Treatment with FDA-approved drugs I found to be much better because I couldn't stomach the Ribavirin at first, so my doc was able to lower it and then work back up gradually so I could tolerate it. My doctor could treat me based on my needs, not trial protocol. To me, clinical trials are like driving used cars with no warranty, and FDA-approved treatments are like being in a cadillac and having everything about the cadillac conform to your own specific needs.
I've been in one clinical trial and two treatments with FDA-approved drugs. The only bad thing about the trial was I had to go exactly by the trial's protocol, and when my viral load wasn't low enough, I got kicked out of the trial.
Treatment with FDA-approved drugs I found to be much better because I couldn't stomach the Ribavirin at first, so my doc was able to lower it and then work back up gradually so I could tolerate it. My doctor could treat me based on my needs, not trial protocol. To me, clinical trials are like driving used cars with no warranty, and FDA-approved treatments are like being in a cadillac and having everything about the cadillac conform to your own specific needs.
Ditto, I feel the same way. It was a huge disappointment but I'm still grateful I'll have an opportunity to treat again in a few months with the 7977/riba combo.
I began having weekly labs in October for various reasons, ie: Fibrosure, biopsy, VL and then the trial. I have had these weekly blood draws (6 vials) since Ocotober, I'm wondering rivll if you have the same protocol at your site. I noticed on my labs from 1/11/12 that I have elevated reticulocytes. In looking this up online I found two things one read that it could be caused by med's the other said chronic blood loss. I'm told these six little vials are a neglible amount and am wondering if that is the case.
Does anyone else has information on reticulocytes?
I began having weekly labs in October for various reasons, ie: Fibrosure, biopsy, VL and then the trial. I have had these weekly blood draws (6 vials) since Ocotober, I'm wondering rivll if you have the same protocol at your site. I noticed on my labs from 1/11/12 that I have elevated reticulocytes. In looking this up online I found two things one read that it could be caused by med's the other said chronic blood loss. I'm told these six little vials are a neglible amount and am wondering if that is the case.
Does anyone else has information on reticulocytes?
I think Odinloveslife hit it on the head when she said,
"I think regrets are about expectations not matching outcomes." I feel fortunate to be in s study that I think will be my cure. Disappointed that we had to stop the trial and that with the rollover I will have to take Ribavarin, but one of the things I have learned from this site is that there are a lot of setbacks and there is much waiting in dealing with Hep. C.
No regrets at all, just grateful to have a shot at this...
"I think regrets are about expectations not matching outcomes." I feel fortunate to be in s study that I think will be my cure. Disappointed that we had to stop the trial and that with the rollover I will have to take Ribavarin, but one of the things I have learned from this site is that there are a lot of setbacks and there is much waiting in dealing with Hep. C.
No regrets at all, just grateful to have a shot at this...
He didn't offer anything by way of advice whether or not to quit, but said he thought it was a wise decision after I'd made it. ;)
Yes, the 12 week DET, the 50/50 chance of success, having to do another 24 weeks... My F1... Other options available...
I might just wait for THIS study drug to be approved. Far less sides they say, UND at 2 or 4 weeks... Two pills once a day, no fat.
Yes, the 12 week DET, the 50/50 chance of success, having to do another 24 weeks... My F1... Other options available...
I might just wait for THIS study drug to be approved. Far less sides they say, UND at 2 or 4 weeks... Two pills once a day, no fat.
I thought I saw this.....about ending your tx? Did you and the doc feel the UND. came just too late for a good chance of success?
Will
Will
At this point I can't imagine and easier way to treat than my trial. I feel like I won the lottery in treatment to clear the virus. Now to just to stay cleared.
If Susan failed the triple and she is a GT1 she would be eligible for the BMS 790052/PSI 7977 trial which is designed for those who fail the triple.
Oftentimes, life gives us a second chance. But all decisions carry a risk whether it is waiting, doing the triple or SOC or doing a trial. You could be d*** if you do and d*** if you don't.
I guess you already know I am delighted with my trial. I certainly have written it here enough times.
Oftentimes, life gives us a second chance. But all decisions carry a risk whether it is waiting, doing the triple or SOC or doing a trial. You could be d*** if you do and d*** if you don't.
I guess you already know I am delighted with my trial. I certainly have written it here enough times.
Susan was in an Incivek trial that had a no riba arm. Not only did it not work but it made her resistant to the new P I's.
I had my week 24 appointment today. They had the schedule for my upcoming visits and it indicated week 48 as EOT. I decided to stop.
Still, no regrets.
Unfortunately I won't be able to get into the rollover study without completing the full 48 weeks. It's only available to those who receive SOC and *fail*. I don't see the value in continuing on for another 24 weeks with a 50/50 chance of success.
Hepa thought I was being wise given that I my FibroScan was 6-7 (F1). Said when the study is unblinded he'll get me on one of the two PIs available now. I have excellent insurance so no worries about how to pay for it.
So off I go to get healthy again and take another kick at the can in a couple of years.
Still, no regrets.
Unfortunately I won't be able to get into the rollover study without completing the full 48 weeks. It's only available to those who receive SOC and *fail*. I don't see the value in continuing on for another 24 weeks with a 50/50 chance of success.
Hepa thought I was being wise given that I my FibroScan was 6-7 (F1). Said when the study is unblinded he'll get me on one of the two PIs available now. I have excellent insurance so no worries about how to pay for it.
So off I go to get healthy again and take another kick at the can in a couple of years.
VERY good post Candyman. Still to this day all I can think is that was So not fair, but I guess that's life. :(
Choosing the wrong trial can be a disaster, just ask susan400. She drew the short straw in an Incivek trial and is paying for it dearly........... Choose wisely
I am also currently in a trial. Choose carefully, that's all I can really say.
On Friday I will find out how much longer I will be treating. There are three arms in my study. SOC plus PI (or placebo) dosages of 240 mg or 120 mg.
240 mg treats for 24 weeks.
120 mg treats for 36 weeks.
Placebo treats for 48 weeks.
I am now at week 23. If I'm in the 240 mg arm, treatment will end on Friday. I'm hoping I'm not though, because I wasn't UND until week 18 (no VL done between week 12 and 18, at week 12 I was DET under 25).
If I'm treating for 36 weeks, great. If I'm told I'm treating for 48 that means I'm in the placebo + SOC arm and I will stop PROVIDED that doesn't affect my ability for the 'rollover' study where everyone receives the study drug.
That won't be offered for approximately one year. If I'm just doing SOC now and I can stop and still be offered the rollover, I'll use the next year to get myself healthy to take another stab at it then.
If I must complete the full 48 weeks to be offered the rollover, I'm not sure what I'll do. I haven't even asked the question yet because it hadn't occurred to me until recently.
On Friday I will find out how much longer I will be treating. There are three arms in my study. SOC plus PI (or placebo) dosages of 240 mg or 120 mg.
240 mg treats for 24 weeks.
120 mg treats for 36 weeks.
Placebo treats for 48 weeks.
I am now at week 23. If I'm in the 240 mg arm, treatment will end on Friday. I'm hoping I'm not though, because I wasn't UND until week 18 (no VL done between week 12 and 18, at week 12 I was DET under 25).
If I'm treating for 36 weeks, great. If I'm told I'm treating for 48 that means I'm in the placebo + SOC arm and I will stop PROVIDED that doesn't affect my ability for the 'rollover' study where everyone receives the study drug.
That won't be offered for approximately one year. If I'm just doing SOC now and I can stop and still be offered the rollover, I'll use the next year to get myself healthy to take another stab at it then.
If I must complete the full 48 weeks to be offered the rollover, I'm not sure what I'll do. I haven't even asked the question yet because it hadn't occurred to me until recently.
i am currently in a trial. i love my doctor and especially my study nurse. i have been given excellent care thru out. i am in my 30th week and have 19 more. i became UND as of week 8. i have NO regrets. good luck. belle
I was in a trial ..well still am as a follow up. I failed to clear in my trial,however do not regret the decision in the least.
My feeling is we make our choices after becoming as educated as we can and then like everything else in life...don"t look back or second guess :)
Good luck summer ..it will come to you....
Will
My feeling is we make our choices after becoming as educated as we can and then like everything else in life...don"t look back or second guess :)
Good luck summer ..it will come to you....
Will
Im stil deciding and would like to hear from anyone who may have been in a trial and then regretted that choice for any reason. Stil gathering info and weighing my options. Thanks everyone for any info!
I can't speak from the experience of being in a trial. I want to get into one! It will be difficult for me because I am not treatment naive. I regret doing SOC in 2008. If I could go back in time I would choose to wait for a good trial. Of course that wouldn't be the case if I was facing more serious liver disease.
I think regrets are about expectations not matching outcomes. If you undertake a treatment expecting a low success rate which succeeds you are extremely pleased. If the treatment fails you can accept it. In that respect I don't think trials are so much different from SOC provided you participate with your eyes wide open. Both trials and SOC/triple have risks.
I think regrets are about expectations not matching outcomes. If you undertake a treatment expecting a low success rate which succeeds you are extremely pleased. If the treatment fails you can accept it. In that respect I don't think trials are so much different from SOC provided you participate with your eyes wide open. Both trials and SOC/triple have risks.
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