Last night I had half of the Nuepogen shot. This morning I ache a little but it's not the pain that came with a full shot, so life is getting better. Tylenol should take care of it.
I woke up this morning feeling ok. Outside of the bone aches my head is clear, no brain fog. I'll still have to move slow at times as the fatigue is still there.
All and all I think I'm going to have more good days each week now that the trial drug is gone and my blood counts return. At least now I'm taking the Nuepogen and maybe without the trial drug it will be able to work.
There was one interesting thing that we learned at Hershey yesterday. There's an independent auditor who does nothing but go over the data from Trials. The FDA requires all trials to be overseen by an independent company like this. I'm sure if this company is the reason I was pulled off of the trial drug before everyone else, but I do know they are the ones who wound up pulling the trial drug from the study. It wasn't Roche that did it. Another surprising note is that this independent company made their decision based on our 8 week blood work.
The trial is not over. They feel that the drug is way too strong. They did change their minds about completely removing everyone at the same time. They decided to have everyone continue to take the drug until they hit week 12. Then they remove them.
I'm just wondering how long it takes to get this drug out of my system. But no can say.....I guess that's part of being in a trial.
For today I'm achy and a little fatigued...but all and all Ducky is still here!
5 comments:
I GUESS WHAT I DIDN'T REALIZE UNTIL I WENT IN FOR MY 12 WEEK VISIT IS THAT THE PEGASYS WAS ALSO A BLIND STUDY AND WE DON'T KNOW IF IT WAS 90 MG OR 180 OR SOMETHING IN BETWEEN. SO IF IT IS ALL 180 MG NOW I WONDER IF I WILL FEEL THE DIFFERENCE AND BE MORE SICK EVEN WITH OUT THE STUDY DRUGS. GUESS I WILL JUST HAVE TO WAIT AND SEE
GLAD TO HEAR YOUR FEELING BETTER LAURIE. MAYBE WHEN YOUR NOT SO SICK WE CAN SEE THAT NEW HAIRDO LOL! ROSIE
Hi I realy appreciate your sharing with us. I haven't been told much except that now that I am off the trial then they may increase the Interferon though they will not know till week 24 as that is blind too so now I may get really sick on shot day or not depending on the does I was one, yippee, does it ever end? I feel I am on a roller coaster
Hi Rosie, I am worried about the same thing, tomorrow I am going to be given all new drugs even though I just picked them up two weeks ago, I am worried about the possible double dose as well
Rosie,
Standard tx is no picnic, but I really believe that without the trial drug we'll see more good days each week then we did with the trial drug.
Even though you may or may not be increasing the Pegasys, you'll still be dropping a drug that was way too powerful and full of sides that played hell on blood counts and other parts of your body. The trial drug was something that you took every day and the Pegasys is once a week.
I take the pegasys on Fridays and I don't expect my Saturdays and Sundays to be much better then they have in the past 13 weeks, but I am hoping to have more days good days during the week then I have been having. Before I was lucky to have 1 or 2 good days....
Try to stay possitive, at least now we know what we're dealing with and our Doctors can act on our problems without being in the dark.
Oh yeah!! The hairdo! I forgot! lol. My step son is getting married this weekend so I'm sure we'll have pictures from that. I'll make sure I get them posted! :)
Hang in there Rosie, It's got to get better.
Stay in touch.
((Hugs))
Laurie
Dorene,
Your taking your drugs back because they want to trade your Pegasys in for open labeled Pegasys. They'll keep the trial drug and give you 180 mg Pegasys.
The trial itself is still blinded. We still won't know which arm we have been in. They won't tell us yet How much of the trial drug we were taking, nor will they say how much Pegasys we were on.
But now we do know that all of us are going on 180 mg pegasys.
I supose that what that means is that anyone that was on the placebo is still on the same dosage as they where before. Anyone who was on any other arm of the trial is now dropping a trial drug and all of it's side effects and will now be on a dosage of Pegasys that is more predictable and easier for our doctors and ourselves to manage.
It's not going to be a walk in the park...but it has to be easier on us than what we've been faced with over the past so many weeks.
I have so many friends who have gone through the standard tx and yes they've had a lot of ups and downs....but they've rode it out and they've actually had weeks that have been good to them. I'm looking forward to more good days...
Keep your chin up. We'll all make it through this one day at a time.
Stay in touch...let me know what happens at your Doc. appt.
((Hugs))
Laurie
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