I am officially in Michigan! My parents and I went to the University of Michigan in Ann Arbor and met with the famous Gary Hammer, world renowned specialist in Adrenocortical Carcinoma. In fact, a team of doctors met to review my case specifically in what they called a "Tumor Board Meeting." It was really nice (and relieving) to hear opinions on my case coming from people who have seen many similar patients with my disease (to hear from people who knew what they were talking about.) I was happy that Gary had strong feelings about my treatment plan moving forward.
Place and Janeway had originally suggested the radiation plus 5FU, then Gemcitabine and Capecitabine. Gary dismissed the 5FU right away, explaining that it wasn't used with ACC patients. He also felt that, instead of Capecitabine, Taxotere would be a more reliable chemotherapy used with Gemcitabine to fight my cancer. Another treatment possibility would be Streptozocin, but we weren't able to talk about this chemotherapy specifically as it is given in many different ways. As far as radiation goes, he wants me to recieve Stereotactic radiation. This method of radiation allows the doctors to radiate a certain area of my body without killing all of the cells in other areas that the radiation would go through.
Dr. Hammer found it curious that I am taking Dexamethasone, a generic cortisol, when my tumors are already overproducing cortisol. (Dexamethasone is one of my many daily medications at the moment.) Too much cortisol in the body is called Cushing's disease, and has bad side effects. Right now I am only experiencing roundness of the face, increased appetite, and bad migraines that have been lasting for 5+ days.) He wants to take me off of any generic cortisols and give me a cortisol suppressant called Metyrapone. If I do need cortisol, Gary recommends a medication called Hydrocortisone. It is the very same steroid our bodies produce, and the dosage would be easier to adjust than the dosage of Dexamethasone is.
Tomorrow I will meet with another oncologist, Frank Wardon, and a radiologist, Edgar Ben-Joseph, of whom are both on Hammer's team. We will discuss more of the specifics with these doctors, especially Frank Wardon because I would like to know how the Streptozocin is administered. Overall we had some great meetings today and I feel much more relaxed knowing Dr. Hammer will be fighting with my team in Boston and I for as long as this lasts. He did, like Place and Janeway, refrain from using the word "cure" and stick to the idea of "prolonging" my lifespan... but I'm still optimistic. I'm not a statistic, and hey my body likes to fight under pressure. :) I'm looking forward to tomorrow's meeting.
I'm glad you're with people who really know this illness inside and out, and how to best take care of you! Keep smiling, sunshine :) and good luck tomorrow.
ReplyDelete<3 your cuz, Sarah Shanahan