Wednesday, November 27, 2013

Hoping for new drug

I had my 5th round of chemo on November 11th. Not gonna lie, it was rough. They seem to be getting harder every month. It didn't help that I had some sort of stomach virus the week before, but thank goodness for Zofran or I would have never made it through the week. I went to NYC and saw Dr. Williams on November 14th and he is not happy with my current treatment. I have not been able to lower the oral steroids and I need to be able to do this ASAP. It's been over a year and the steroids are wrecking havoc on my body. We have decided to switch to the Rituximab (Rituxan) treatment for sure. As far as I know, we are still trying to get the insurance to approve it. I'm hoping and praying this comes through before the 9th of December, so I don't have to do chemo again. The plan is for me to go to Roosevelt Hospital in NYC and have the first dose, then 14 or 15 days later, go up again and have the second dose. These two doses, if they work correctly, should last for six months! I will continue the IVIG twice a month at home. As far as I've been told, the Rituximab will kick my butt for a couple weeks but then I should be ok. Hoping and praying this is what I need. Feeling pretty good this week energy wise. Just trying not to over extend myself. On the good days, I try to do too much to make up for all the days I don't make it off the couch. This just puts me on my butt by 7pm, and dog tired. My face still looks like a balloon and my hair is falling out, thin like a grandma or maybe even worse. Don't expect a Christmas card with my picture on it, way too vain for that right now. Hoping that once we stop the Cytoxan my hair will come back. Otherwise, I'll need some friends to go wig shopping with. Happy Thanksgiving everyone!

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