Annoyed

So my appointment was at 2pm. Kathy drove me out there and then they said there wouldn’t be enough time to have it because I have to wait hour after the parp is given to make sure that I don't have a bad reaction – so annoyed. They had already hooked up my port AND given me the freakin decadron which is almost as bad as the chemo. Anyway, I’m home now, wired, can’t think straight, bad headache –all from the decadron. I have to go back tomorrow at 9:30.

I’m on the Special Access Program for Iniparib (parp) with Gemcitibine and Carboplatin. I was on Gem and Cisplatin before and everything I’ve read said Carbo is easier on you but apparently the nurses there don’t know that – they say it’s worse and I’ve got 5 didn’t anti-nausea drugs to take - ridiculous – I can’t even imagine what all the side effects of those will be.

 I have to go there twice a week for treatments day Day 1 and 8 is  Gem and Carbo and  parp on then days 4 and 11 is just the parp. Then one week off. (three week cycles)  This is the exact protocol I was looking into with the clinical trial in Seattle.

I’ve been on the Triple Negative Foundation discussion forums (very informative) and it seems this does work really well for some people. One woman started in this trial last year and has been on it ever since! It cleared everything up and her dr doesn’t think she should come off until it stops working. CANNOT even IMAGINE!

oh well. I guess I just have to be thankful there is something to try.

Dr. Klimo said the idea is that you do it for a few months and if it works then you continue with just the parps. From reading what others in my situation are going through it seems if you find something that works that you don’t stop until it stops working. There are many people on the discussion boards who have tried the parps and they didn’t work. Anyway, I am really hoping that it works and FAST- having lots of body aches and pain – taking Advils round the clock and my skin mets are getting really bad and uncomfortable. These are the first "symptoms" I've ever had from my cancer and it seems to be getting worse by the day.