Tuesday, June 29, 2010

Lots of news

Well, here is the update as promised. Last week we went to Maryland to the NIH (National Institute of Health) to begin a new study. Our (Kevin and I) visit consisted of 9 hours of CT scans, PET scans, echo cardiogram and EKG. It was quite exhausting for both of us. The hospital was nice and most of the staff was really nice too. I started taking the new drug on Thursday and I think this is going to take some getting used to. I have had constant headaches, diarrhea and my blood pressure is rising. I have to monitor my blood pressure because it will rise then I will have to take meds for it (it should stabilize again after I am done taking this med). I take 2 pills every day. I cannot mix this medicine with any other medicine (Tylenol, Motrin...) because it can damage the liver. So, this is another one that makes me feel crappy and I think I just have to get used to it. This medicine works by cutting off the blood supply to the tumors. Other people who have been on this study have shown tumor shrinkage. So, maybe it will work.
So, my list of things to do include, getting used to the medicine, getting used to flying and figuring out the in's and out's of airports. I will be flying to DC every two weeks for two months then every four weeks but I need to see a doctor every 2 weeks, so I will be going to Ann arbor between DC appointments.
As always, thanks to everybody for their prayers and support. And a special thank you to Uncle Denny and Aunt Lynda for being such incredible hosts for us. I will follow up on updates a little sooner than normal since things are so new for us.

Thursday, June 03, 2010

New Option

Hello Everyone! I know it has been a while, but I just had my CT scan and here is what is happening. Apparently, my largest nodule has grown 50% in a little less than a year, 27% in a quick 12 weeks. Yup, I am a little bummed out, but at least there are other options out there for treatment. Unfortunately, the University of Michigan has used up all of their resources for treatment options (as of now) and I will be transferred to the National Cancer Institute in Maryland. There is a study drug available there called Cediranib. This is the first drug ever that has been made specifically to treat my kind of cancer. My doc said that he has send 3 other people there and their tumors are actually shrinking. This is a pill that I will take every day at home. I will be going to Maryland every 2 weeks then every 4 then every 6 weeks and I will be going to U of M between those treatments. This seems like a lot but it could work. The side effects of this medication are fatigue, hypertension and dirreah.
I am trying really hard not to be discouraged, but it is hard because I thought what I was on was working. Well, keep praying. I know it is all going to work out however God has planned. I will keep you posted but for now I will have 4 weeks without any meds so I think I am going to enjoy the beginning of summer with Kevin and the boys.
Thanks for all of your prayers, love and support!