November
8 ~ Well here we go again. I went down to USC and gave
about 20 viles of blood. They took some for the Immune System study they
are doing too. Then I had to answer a bunch of questions for the study.
First we went through an alcohol questionnaire. I had to try to remember
back to when I had very first started drinking, how much I drank, why I
drank....sheesh. I had to really strain my brain to remember THAT far back!
After that I had to answer a cognitive questionnaire. They want to study
how the drugs affect us and how we feel. I think that part is really interesting.
Once that was all done, I had to finally give myself my shot. Although
Roche doesn't have that handy dandy little pen that Schering does, they
do use very tiny needles. It took me a minute, as I sat there thinking...WHAT
ARE YOU DOING LEIGHANN - HAVE YOU LOST YOUR MIND??!!
They have us taking 1ml of Pegesys once a week and either 1000 or 1200
mg of Ribavirin, depending on weight, every day. I am taking the 1000 mg.
- 2 in the morning and 3 in the afternooon.
I was fine until around 5:30. I started getting cold and my back started
aching. I also started getting a nasty headache. I'm only supposed to take
the Darvocet now and then, they would prefer I not take it at all, but
I grabbed one anyway! I went up to bed about 7:00. My muscles just seemed
to ache and I couldn't get comfortable in bed. I woke up a couple of times
during the night, and went downstairs about 2:00 am. I was nauseated and
light headed so I laid down on the couch and fell back asleep. When I got
up in the morning, I felt lots better. I do have that hangover feeling,
my head is fuzzy, and my back still aches. I noticed when I got up that
my hands ache as well. I'm sure that will go away during the day though.
All in all, it wasn't a bad first shot. I half expected it to be like my
very first Intron shot, but it really wasn't unbearable and if this is
the worst there is, I can sure live with it. Now if I can only lose some
weight while on this study! I turned into a little round girl again while
off treatment!
I felt really lousy the next day. I still had a headache and felt that
usual hangover effect. I took another Darvocet and just kind of laid around
all day. I was nauseated and my back ached all day. I went off to bed early.
The rest of the week I felt good! I mean, NO HEADACHE - nausea once in
a while, achy bones, sinus troubles, but NOTHING like any of the other
treatments I have been on. I was just amazed. My eyes are kinda blurry
after I take the Ribavirin but other than those few things I felt just
fine. It's almost like I'm not on the interferon at all. I know there is
no placebo on this study, and I know this stuff is flowing through me,
but WOW where
was this stuff 2 years ago???
November 15 ~ I took my shot about 6:30 and waited. And waited. And waited. NOTHING. Not even a headache! No chills, no fever. My back did ache and I couldn't get comfy sleeping, but that was IT. Nothing else. This is just amazing to me. I cannot believe that I don't feel nearly anything at all. My stomach is a bit upset but it's growling! I have noticed that my taste buds seem to be lacking a bit. And my sinuses are a mess but that could be the weather here too. It's dry and cool so that could be the cause. I haven't gotten into any mood swings yet that I can tell, and my family would definitely let me know if I had. I do notice that I am getting a bit more out of breath climbing our stairs. That would be the Ribavirin though. I don't know what the sides are for the PegIntron by Schering, but I can certainly tell you that the sides from the Pegesys by Roche Labs does not seem to have much of any! (so far!!) I was worried about doing my shot next week because I was afraid of feeling lousy on Thanksgiving but heck, if it's going to be like this, it won't matter!! If this is the way it will be I won't mind at all doing this drug for 4 years!
November
22 ~ Well I had my first CBC check on the 20th. Susan, the Study
Coordinator called me on Tuesday the 21st and told me not to take my shot
this week. It seems my Neutrophiles are at 700 and they should be at least
1000. According to the protocol, I have to delay the shot. I'll go in on
the 27th and do another CBC. If that one shows the neutrophiles back above
750 I can start my shot again. What a pain in the butt. My neut. always
stays low on treatment. I hope that doesn't keep me from staying on this
study. I'm still taking the Riba every day though.
I did notice
this week that I am running lower on energy and more fatigued. I've also
got the diarrhea again, but not nearly as bad as when I was on treatment
before. I've been getting a headache in the evening the past 3 days or
so. They are usually centered in the back of my head and pound like crazy.
I've taken a darvocet each night for them so I'll have to tell Susan that.
She wants to know when I take them and she had mentioned before that they
may try to find out why I get them at all. I do hate the headaches. My
brain fog is getting worse as well. I couldn't even remember how to make
a grilled cheese sandwich for my granddaughter! BUT...all in all, the sides
are still a breeze! I just have to lay down and nap every day now.
I was off the
shots for this week until my Neutrophiles went back up to 1000. It was
nice not having to take it, but boy what a headache I had. The entire week
off of the shot my head pounded. So far, this is the only time I've really
had to take my Darvocet.
November
27 ~ Well, I am back on the shot. Now I am doing it on Monday
nights. Hopefully I won't have to delay it anymore. I haven't seen any
bloodwork since the Nov. 11 draw, but when I do I'll have it posted here.
This month was really alot easier than I thought it would be. I even went
to 6 Flags Magic Mountain and rode all kinds of roller coasters with my
brother and his kids and Erika! I chickened out on the big new one, though!
At this rate, I think Peg is a much easier drug to manage.