The Game Plan...

I am sorry that there has been so much happening, so I have not posted. It is difficult for me when things are so up in the air, and undecided or changing so quickly. I can't really let others know what is going on when I personally have no idea, but we finally have a plan. As you may remember, originally I was going to be having surgery today, Sept 29th but obviously that was postponed/cancelled. We went to Memorial Sloan Kettering on Friday (Mom, Josh, and I), and I was sort of hoping they would just say "you are doing the right thing, keep going", but that is not quite the answer we got. They did not disagree with our plans, but basically both the surgeon and oncologist felt it may be good to wait on surgery and look into some kind of medication, most likely through a clinical trial. We got names of doctors from University of Maryland, and Johns Hopkins and have been trying to contact both hospitals about the options for trials they might have for me. My endocrinologist in DC knows people at both places, so he was helping us look into what is out there. I will be going to meet a doctor at Johns Hopkins on Oct 22nd, but not to actually start any clinical trial, just to meet him and make the contact in case we need him in the future.
The decision we have come to is to try the medication called Nexavar, which is similar to the Sutent that I tried on the clinical trial, but I will not be part of any trial. The reason we are not going with a clinical trial right now is because most of them are in early phases, so they are being tested more for safety than for their effectiveness. Dr. B said the decision is up to us, but if it were him he would go with a medication that has more of a track record. Also, I can't get in to see any doctors about trials for a few weeks, then we would have to do scans and it may be that I would not even qualify for a trial, then 2 months would be wasted.  Another benefit to not doing a trial is if my blood levels drop this time, they will be allowed to do things to help boost them, where on a trial they would be limited in what else they could give me. We are waiting on surgery for now. If have start having "symptoms" they could operate at any time but we are going to give the medication a try, and just control the pain I have been having with medication. So I guess the prayer I need is that my pain will be controlled, that I will not get as sick on this medication as I did on the Sutent, and that my insurance company will pay for the medicine. Hopefully I will tolerate this medication better. It has been a crazy, and very draining week but I feel relieved to have my radiation oncologist helping manage my pain, and to have finally come to a decision so we can move forward. Hopefully I can meet with Dr. B on Monday to get the prescription.

Sorry again that I did not keep you updated while things were so crazy. Thanks for all the prayers!!

Hattie