OK, so we know that no tumor was found during my Pituitary surgery. The Surgeons are expecting pathology results tomorrow, but are not hopeful that anything is going to be found. My Cortisol levels are not coming down at all. That in and of itself is puzzling to the Neuro team just because any shock to the Pituitary should have an effect on what it puts out, and mine, after being chopped up and left with 30% of what it started with, is still putting out like a house on fire. At least we know my pituitary is healthy! You may be asking "just where does that leave our Princess?" and after meeting with my Gaggle of Doctors on Friday, I can partially answer that question...with caveats...and variables...and contingencies...
We have kicked the Cushie-mobile into reverse, backed up the pituitary off ramp, and merged back onto the ectopic tumor highway. The NIH detectives have returned to looking for a rogue tumor somewhere in my body that is sending signals to my adrenal glands to produce cortisol full speed 24/7. I have several more muy radioactive-o scans to complete during my (extended) stay here that may still turn up the little bugger. These are scans I didn't have during my September visit because we decided that the probability was higher that the tumor was in my pituitary. The Doctors don't want me exposed to alot of extra radiation if I don't need to be. So keep your fingers crossed that we will actually find the source of my Cushings in one of these scans. Based on my track record up to this point however, while I am cautiously optimistic, I just can't really cross that threshold into hopeful.
Where does that leave me in the meantime? Medication. Medication to control my cortisol level. More specifically to bring it down. My Endocrinologist in Kansas City prescribed the most common and well-tolerated medication for cortisol control way back in June, but as we have seen so many times before, I didn't react quite the same way to it as most other people did. I had quite a bad reaction to it actually that involved my liver function and we pretty much can scratch it off the list of viable drug options for me. That leaves two options that are currently on the market - one that is so toxic my team of Doctors does not even want to try it, and one that odds are will be ineffective on my condition based on how high my cortisol levels are. Does anyone else feel that we've just gone down that one way street that ends with a brick wall in a car that has no reverse gear? But this is the NIH, and I am in the care of the best Cushings team anywhere. It seems they have one pharmaceutical card left to play. There is a study out of France on a drug called Mifepristone (Keith and I are calling it "Muffy" for short) that looks promising in the control of Cortisol production in ectopic Cushings patients. We're going to try this medication hoping that it will get my system back in order while we continue to look for the root source of the Cushings. If everything goes according to plan, I'll start taking that on Wednesday.
And there you have it. Re-cross those fingers and toes and keep sending those positive vibes. This week is going to be busy and hopefully will yield some good results. I will, as always, keep you posted with breaking developments and nuggets of humor along the way!
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