I haven't signed up for anything yet, I'm just getting the information today and I'm processing it. Obviously it's something that I need to talk to Tim about because Spring said that we are not allowed to get pregnant while I am participating in the study. I think I can put that off for a good cause.
The study will be about six months long. I will be on either the Tobi or the Levaquin (the doctors will know what I am on, but I don't think I will) for 28 days, then I will be off for 28 days and that counts as one cycle. I will have to complete three cycles in the study. The part that I'm hesitant about is all of the clinic appointments. I will have to do an initial appointment to make sure I am eligible for the study while I'm off Tobi. Then if I'm eligible, about two weeks later they will start me on the drug. The first time I take the drug I will do it at the clinic to make sure that I don't have any negative side effects before they send me home to take it - so we're already up to two clinic visits, in other words, two days off work. Then every time I go off and go back on, I have to go to the clinic and get PFTs, blood work, fill out questionnaires and be evaluated by the doctor. In the end, it adds up to eight clinic visits over the 6 month period. I'm just afraid of taking eight days off work. All of the clinic visits will be paid for by the study people and I will get compensation for travel (and free parking!).
There are just several pros and cons, I'm not sure right now. Obviously, I have time to think about it, the lady was extremely nice on the phone today and told me that I can take as long as I need to think about it. I've always wanted to participate in a clinical trial; I think it's such a great opportunity for me to be trying out a new drug (maybe) that could help so many people!
I'd love to hear your input on what you think I should do, or if you've participated in a clinical trial before. This is all new to me so I'm just processing right now. Thanks for
I have participated in a clinical trial....I want to say it was Pulmozyme? I felt really good about it when I was doing it because I felt like I could help give back in some way. It was a long time ago =) I would lean towards doing this one, since you are guaranteed to get a drug (as opposed to trials where you either get the drug or nothing).
ReplyDeleteI understand the 8 days off work thing....if your school knows about your condition, maybe you can alert them ahead of time to make sure there is sub-coverage all planned out, and try to make the appointments either early or late, so you only need to miss half days? Not sure if that is possible. Maybe one of the clinic dates can be timed during winter break and spring break, so it only ends up being 6 days off....and on the days off, do all your other errands and make other doctor appts (eye, gyno, etc) so you don't have to take time off for them later?
Good luck, I Hope you work it out!!!
What a cool opportunity! I think clinical trials are an awesome way to help out the CF community.
ReplyDeleteUnfortunately, I was in a clinical trail that resulted in a 22% lung function drop that took a lot of work to get back because I did not tolerate the drug well. The drug was safe and will be on the market soon so it was just my bodies reaction to the drug. I guess that it may have happened if I had gone on the drug after it was approved anyway, but I may have stopped the med sooner because I would not have been part of a study. I actually was unable to complete the study, but stayed on the drug longer than I probably should have. I just like to warn people that of course there are risks involved and unfortunately I experienced some first hand.
Believe it or not I would still be willing to try another trail again in the future if given the opportunity. Let us know what you decide!!