This seems to be the hardest part at this stage. The waiting...waiting to see what 'arm' of the study I'll get...waiting to do the first jab...to see what, if any, reaction I'll have to the chemo. Waiting to see what my life is going to be like on treatment (although I know that will probably evolve as the drugs build up over time).
I've not been sleeping well, anticipating all of this. I didn't go to bed until 1 a.m. and was up at 6:00 a.m. ARGH - I love sleep and need to just GET ON WITH THIS!
Today, I think I'll see if Em wants to take our dogs on a nice long hike in the state park trails a few miles from our house. That would probably go a long way in helping distract and relax me. BREATH...yes, I remember to do that, too :)
I've heard from KennyG in Alabama and he's doing amazing after his first shot. So well, in fact, that he said he wondered if they'd given him a placebo. This was a joke, of course, because there are NO placebos on this trial and he knows which arm he got (the 28 wk course with all 3 drugs). He'll be taking 17 pills a day (not counting the tylenol).
I'm sure I'll be taking a bit smaller dose since my weight is less and it's based on weight. But for a person who hates pill taking, it is gonna take some getting used to all the same. It sure is encouraging, though, to hear how little the drugs are affecting him so far (it's been slight and managable with tylenol - slight flu-ish feeling, slight headache and a tad sluggish). YIPPEE! Hope I'm as lucky!
Monday, April 30, 2007
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6 comments:
I hope you will have a smooth ride. Reagular treatment (48 weeks with 2 drugs) is not that easy. It starts easier and then becomes more and more hard. Good that you are doing only 28 weeks, you are doing a great thing I think.
Hi Tea - I won't know which arm of the study I'll be assigned until Thursday when I get the shot! There are 5 arms and the possibilities are 48 wks and up to 54 (arm 1/control arm), arms 2 & 3 are 28 wks, 4 & 5 would be 48 wks. We'll see....
Do all arms of the study get the new medicine?
Hey Un - yes - but at varying stages. In the control arm, you don't get it for the first 24 weeks, but can opt for adding it to the 2nd 24 weeks if you're not responding. The other 4 arms get the new one - 2 arms get it from the get-go (triple vs combo) - one for 28 wks, the other for 48 wks. The other 2 arms get it added in after a month of combo therapy - one for 28 wks, other for 48 wks. Don't know if I explained it where it makes sense?? :)
Hey Denise,
I think you are taking your first dose of medication tonite? I just wanted to send you lots of positive energy that any side effects will be LIGHT and you will be up and running in no time.
Love you girl,
El
Thanks Sweetie - I'm doing my first shot tomorrow. have to be at their ofc in New Orleans at 1:00. will be there for abt 2 hrs they say, learning how to do everything. Will take shot last and then drive home. thx for being there for me! love you, D
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