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Avatar universal

question regarding participation in a clinical trial

hello,

when somebody is on SOC, the patients can choose the day of the week when do the shot. also kinda arrange the blood tests and dr appt around their work.

it looks like when you are in clinical trail, you will need to spend much more time with different blood tests and appointments, even if there is no serious sx. also you can't choose the day when you take interferon.

my question is: when you are on trial, can you work full time and still do it?

thanks
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Avatar universal
Yeah that really low hgb gets pretty surreal. I read in the fda info that its caused by bone marrow suppression with boce rather then red blood cell destruction like riba. I didn't realize that earlier during the trial.  
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Avatar universal
My HGB got as low as 8 and for most of my tx stayed in the 8's, walking was an effort, even standing for a period of time was rough. No way could i have done physical labor.
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Avatar universal
"You worked all through tx with hgn in the 9s,"
meant hgb
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Avatar universal
You worked all through tx with hgn in the 9s, that's impressive. By the way, thanks for helping me get through my Victrelis trial, you were my boce mentor, lol  Hope to follow you to SVR.

Sorry to interrupt Andy,
-Dave
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Avatar universal
thanks a lot guys!
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971268 tn?1253200799
My husband was in the IIb trail of TMC435, and he got to choose which day he did the interferon (was allowed to move it one day per week til he got to the day he wanted.) He worked throughout tx. He did have to go to the doctors a lot, but there's also an advantage to this, even though it's a pain: you have your hand held a lot more, there's always someone to listen to your symptoms, they pay really close attention to you and take care to prescribe you helper drugs if you need. I guess how good this is also depends on how well you like your trial docs & nurses.

Anyway my husband cleared on TMC435 and is now SVR. He was lucky and did not have terrible sides. Good luck whatever you choose!
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374652 tn?1494811435
I too was able to choose the day I took my shot,  I did it on my day off, Now looking back I would choose to take the shot the night before my day off or the day before my day off.  also, I think most of the blood draws can be arranged on your days off or maybe early in the morning before work on occasion.
I worked the first 5 months, and then I got kinda layed off, with minimal work, but It is kinda nice to have the time off to move at my own pace.
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Avatar universal
Count me as one who worked, also the trial i was in didn't matter what day i started my shots. Good luck guy.
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Avatar universal
thanks Dave,

it is true, nobody knows how i will react to tx... hoping for mild to "normal" sx, but who knows what will happen...
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Avatar universal
thanks a lot for the info!

i'm just trying to get much more info as possible about it.

my GI doctor kinda trying to get me in SOC (interf + riba), and i'm looking for other possible opportunities when i can increase my chances of sucess and cut the tx time

a trial option looks kinda promising, just didn't know how much involment are required...

thanks!
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Avatar universal
thanks Will!
it looks like there are a couple of open trials here, just thinking about trying to get into one of them. (one is TMC435 and another is BI...)
so trying to get more info and understanding how it works, and how difficult is to do it, hoping sx are not extrime...

regarding Labcorp and IL28B:  my issue is that i don't have any scripts from a doctor (my GI doesn't think that it is needed, as it not used in SOC).
but i will call them just to have this info available, and let you know the results
Helpful - 0
1658980 tn?1330711550
I work a lot - 10 to 12 hours per day but my schedule is Tuesday through Saturday so I have all of my appts. on Mondays.  Also, my research hospital is just a few minutes away from my job so that helps.  I had to do my shots on Mondays for the first three weeks but then the doctor helped me back up the day to Saturday since I am off Sun/Mon.  I think it is more the research nurse/coordinator that you need to be able to work with to get your schedule right.  Don't forget that the drug companies have a lot at stake with these trials and the doctors/facilities are compensated so it is in everyone's interest to try to work with your schedule.  I hope that you find something appropriate for you.
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Avatar universal
I worked full time as well. And I could take my shot on whichever day I chose. Each trial has its own set of parameters so you will need to evaluate each trial separately. Good luck.
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Avatar universal

Andy... I pretty much worked full time while in a trial...and just had appoints around my schedule. there are a fair number of visits involved with most trials.however  so some time off  by going in later or leaving work earlier may be involved.

Also ,as far a work goes.. the way you feel during treatment may alter your ability to work at the same hours or pace ...would just depend I guess on what your job is and the Sx. you would experience

BTW...let me know how you make out next week on the Lapcorp thing...if you wouldn"t mind...THX

Willl
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Avatar universal
In my trial I could have chosen any day to start tx within the given start week, but I am sure it is different at each tx center.

I didn't work, but my doctor didn't care if I had worked or not as long as I was healthy enough and able to make appointments and take my drugs. It will probably depend on how you respond to the meds and if you can handle work.

Good Luck,
Dave
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Avatar universal
i don't have one, i'm not in any trial

just trying to find out more info regarding it...
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Avatar universal
Each trial is different. Ask your trial director.
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