FINALLY!! Some promising news!!

Well, it looks like this trip to Texas may not have been a wasted trip after all. I met with the gastrointestinal doctor this morning and liked her immediately. And the first thing she said to me after she introduced herself was "Why haven't you been sent to see me before now?!?!" Apparently, she is and "expert" in ACC and is pretty much the doctor to see at MD Anderson for ACC. She has seen over 300 ACC patients in the past few years, and said that on her clinic days, there are usually 2 or 3 patients in the waiting room with ACC. (Now why NOBODY has referred me to her in the past year and a half since I first came to MDA is beyond me, but we're just glad we finally got in contact with her). She spend about 45 minutes talking to us and went over all of the regular protocols for treatment of ACC, in order of most effective. She agreed with the treatments I had previously had for the most part. However, Mitotane is still considered the standard of care. She explained that patients typically take 3 grams of Mitotane when the disease is not evident (i.e. after it has been removed surgically, which was my case when I initially started the mitotane). After the cancer returns, however, the dosage of mitotane is supposed to be titrated upwards until it reaches a level of 14-20 in the body. At that level, she has seen stablization of tumors and in a few instances, some shrinkage. When I was on the mitotane initially and the cancer returned, we didn't increase my dosage, which could be why we didn't see good results.

That being said, the GI doctor recommends we try the Mitotane again, this time starting at 3 grams/day, and increasing my dosage every week until the mitotane level in my blood reaches 14-20. She said depending on how my body absorbs the medicine and how bad the side effects get, it could take UP TO 3 months to reach that level.

In addition, she told me about 5 different chemo regimens that could be used in conjunction with the mitotane. This step would only be taken if there was a delay in getting my mitotane level up - they would essentially use the chemo to buy me some additional time to allow the mitotane to get to the desired level.

Needless to say, we were very pleased with this news. We found out we still have some options to try and there is still hope! And this would allow me to do treatment at home in Alabama!! The GI doctor seemed very willing to collaborate with my oncologist at UAB in helping monitor and conducting this course of treatment. And I can still come out here for check ups in the meantime if need be. I've emailed my UAB doctor and hope to get in touch with her in the next few days and hopefully start next week.

Obviously, we hope this treatment works. The doctor did emphasize that this is not a cure for ACC. But the hope is that the mitotane turns this from a life-threatening disease into a chronic, manageable disease that I can live with. If this treatment doesn't work, she did say I could still potentially participate in the clinical trial that's currently on hold if/when it becomes available in the future. In addition, she was aware of the Phase III trial that's being conducted at Vanderbilt (the one I didn't qualify for) and said they were making quicker progress than initially expected. Apparently, they've had more participants join faster than expected and showing good results, which is great news because that means it's close to potentially being available as a standard of care!!!

Overall, we were VERY pleased with the doctors today and the news they gave us. It's very upsetting that we weren't put in touch with the GI doctor sooner, but feel very blessed to see her now. (BTW I also met with the endocrinologist and he basically agreed with this treatment plan). The most important thing is now we have hope - we have something to try that seems promising and we know that we aren't at the end of the road. We were starting to get discouraged from running out of options, but now we have options! So thank you to everyone who said a prayer for us these last few weeks. They really do make a difference!! As long as my oncologist at UAB agrees with this treatment (which I have no reason to think she won't), hopefully things will start going within the next week. I will keep everyone updated as soon as I hear something!!

Oh quick side note... because my blood pressure is so elevated and my ankles swollen, the doctor today decided to draw blood to check my hormone levels to see if that could be causing either of those symptoms. It will take about a week to get all the results back so I should know by the end of next week about that. I'll of course keep you updated!!