Sutent

My insurance approved Sutent!!  My doctor was shocked; but we're all very happy about it.  As with xeloda we have to use Curascript, a mail order pharmacy, Sutent should be arriving at our house today.

We saw Dr. H yesterday for blood work and to review what to expect while on sutent.  Both Dr. H and my nurse warned me that this isn't an easy drug, people who have taken it tend to have a lot of side effects that I should be aware of, including: weakness, nausea, diarrhea, jaundice, pain and swelling of the hands/feet, liver damage (ironic huh?!), mouth sores, taste change, hair loss, body pains, low blood counts, etc...  As I have said with all of the chemotherapy drugs I've taken, I can handle the side effects as long as it's working; and I'm very hopeful and optimistic with sutent.  I will begin taking sutent on Monday; two pills, once a day, continuously.  If I am handling the drug well, I will continue this schedule and will receive a ct scan after two months.  If I am having trouble with extreme side effects, I will take sutent for four weeks and take two weeks off before beginning again. 

Between the monthly fees of the $100 copay for the sutent and the ~$100 for meds to prevent and fix side effects, this is going to be quite the financial struggle; but if it works, I don't think you can invest in anything better than added time to your life. So, here we go Sutent!

UPCOMING APPTS:
7/26: check-in w/Dr. H & port flush

The Past Few Weeks

So it’s been a complicated few weeks, and I should have written earlier; because now it all seems like a whirlwind of information, so I’m going to break it down by date and skip a lot of the details.

6/15: We met with Dr. H, and took another walking test of my O2 levels. My O2 levels again dropped pretty low, but because all of the tests turned out okay the week before, we went ahead and administered chemo.

6/22: As with the past few weeks I did another O2 walking test, this time the results were dangerously low. Dr. H refused to administer chemo and ordered pulmonary tests as well as a ct scan.

6/25: I called in the morning was able to get the pulmonary testing and the ct scan scheduled for the same day, Monday the 25th.

6/29: Results.

The pulmonary testing showed that my lung function seems to be stable from the pulmonary testing that I had a year ago. This is good news, but leads to some confusion as to why my O2 stats are dropping so low, Dr. H would like me to meet with a pulmonologist (yet to be scheduled).

The ct scan showed both increased growth in the existing tumors and that there are additional small tumors that have popped up in my liver. We have officially stopped the use of Gemzar, as it is not working. After three years of constant chemotherapy and the limited information we know about thymic carcinoma, my options are limited. My best bet seems to be a phase two clinical trial that is being run at the NCI in Bethesda, MD; however, due to the financial burden that this would put on us, we are trying to get my insurance to approve the same chemotherapy drug (Sutent) that they are using but have it administered at BI in Boston. If the Sutent is approved by my insurance, I would be taking it on a continuous basis, and the co-pay will be $100 each time we need to fill it; but I’m figuring it’s still cheaper than flying to Maryland constantly – so fingers crossed!

I think I covered the important highlights; I will write again soon as to whether or not Sutent was approved, and the specifics of our next course of action.