My trial has been cancelled.

[susan400]

I just got called by the study nurse.  The trial I was in was cancelled because 3 patients had elevated bilirubins.  For now, the plan is for me to stay on SOC until my follow-up appt. next Wed.  Dr. mentioned that he'd like for me to consider rolling over onto Boceprevir if I can find a way to get it paid for, since I've already been on the SOC for 9 wks.  I will be unblinded on my viral loads and will find out if I was getting the placebo or the study drug; but that information wasn't available when she just called.  My brain is feeling confused and honestly, I don't even know where to start.  I have insurance, but these drugs aren't on their formulary and it's a sh*tty insurance because it's Medicare Advantage.  So, I'm not sure if the drug company will enable me to have any patient assistance.  My husband started a new job and was adding me to his insurance, but he doesn't have any paperwork or card on that yet and I don't have any idea whether it's in effect, or if it will even cover such expensive drugs right out of the shoot.  Part of me feels like giving up and saying that's it, I've had it, no more I quit.  Because I'm just so tired of trying to get SVR.  But, the other fighter part of me, says, what do I have to lose by trying?  I don't have any desire to wait another 5 yrs for all oral treatments, so that's not even on my radar screen.  I've been doing treatments on and off since 1997 and I am wanting to get on with my life.  I just wanted to let my friends here know what I found out.  Susan400

[dointime]

Oh cr@p!  Poor you.  

As frijole says, be glad you didn't get the test drug if there's a safety issue with it.  I just hope that you can go on to get what you want next.

AND the trial doc better finally come up with your IL28B result after all this.

All the best,
dointime  

[Trish77]

Susan, I'm sorry for this upheaval.  Could turn out to be a blessing though and I agree with Frijole that perhaps you were lucky instead not to be on the trial drug.  You've developed no further resistance issues and 8 weeks of SOC is a sidestep even though I know you had big hopes for this trial.  There are other drugs coming along that will be an option for you.  And perhaps you can roll over into Boceprevir, a phone call to their patient assistance program?  Will they tell you your viral load now?  Here's hoping on that!  Hang in there... !

Trish

[susan400]

Thanks everybody.  I have applied to the patient assistance program, at least my part of the form, now I'm waiting on the doctor to actually fill out the prescription portion of the form.  I faxed it down there this afternoon and the study nurse has it in her hand and she's supposed to give it to the doctor tomorrow.

Frijole, I agree, my luck is pretty bad.  Don't know why, it's not like I'm running around doing bad things to people.

Dointime, I did ask again about that IL28B test and then finally found out that after 9 wks, the lab tech who drew my blood for that test, at the trial site, put it into the wrong kind of tube. So, now, when I go back for follow-up (it's sort of late in the game), but they are supposed to redraw it.  

More bad luck.

Just like Gilda Radner always said on Saturday Night Live..., "It's always something"  (or she said it like...sumping)

I am SO GLAD I'm not a gambler..., don't think I'd be doing so well w/that, what do you think?

I am glad that I did not have more damage to my body by having an elevated bilirubin.

They didn't have the viral load information yet, as of this afternoon, but hopefully sometime soon at the very least by my appt. next Wed.

Susan400

[flcyclist]

Maybe this fork in the road is what will lead you to a better result.  I believe things do happen for a reason, so maybe this was in the big plan.  Hope you get the assistance with boca and get that ball rolling quickly.  Keep pressing on.  We're all rooting for you Susan.

[crossroadsec]

I don't fully understand how the trials work, but you sound like a CAN DO girl. Where there's a will, there's a way. Here's to resiliency.
Sounds like you're one of those punching bag dolls w sand in the bottom - you'll bounce back up n face it again. Hoping for the best for you... Karen :)

[can-do-man]

"but you sound like a CAN DO girl."

I would be one lucky dude if she was...:)

As a matter of fact i wish all the girls here were can do's............:)