Tuesday night I emailed Dr. Wells about what my endo here had said. To be honest, I trust his word more than her's because he is a specialist and has 30 years experience with MEN, MTC, and so on. My endo is a general endocrinologist and although she is trying her best, I'm her first MEN case soooooooooooooo.
Yesterday (December 15th) I talked to Dr Wells on the phone and he said that yes I can have the laparoscopic surgery done on my adrenal glands and whether I'm in the study or not and whether I want to remove the tumors or not he would STILL recommend it to me because it is much easier. I asked him how he could be certain that the pheos are only on my glands and not what the spots in my liver and so on are as well. He told me (and this was new to me) that they have yet to see a patient with MEN2a who had malignant pheochromocytomas or pheos outside the adrenal glands. He has no problems answering my questions or calling me back anytime I call. I like that. Heck, he's been the Director of the American Association of Surgeons before and I can get ahold of HIM.
I told him I want in the study. I also told him that even if it does nothing more than shrinks a tumor or two I will consider it a success because it holds hope for my children. He told me "Oh no no we are working on a cure here. You will definately see more happen than a few shrinking tumors". He says this drug has shown remarkable results in Phase I of the study and seems to be doing well in the Phase II now which is what I would be in. He sounds really confidant... seriously.
We discussed me having the adrenalectomy at Duke University and he said he has already spoken to a Dr. John Olsen who "who is highly experienced in laparoscopic adrenalectomy. He is top class and you will like him". I asked him if I needed the Octreotide Scans again and told him Vin was wondering how they could know for sure that my pheos are pheos (which I told you how above). He said the Octreotide scan doesn't always tell you what they want to know and he doesn't know why they are doing it. It's pretty much a waste of money right now. He said that everything I've told him thus far is pretty textbook and he has seen plenty of MEN2a patients with exactly the same things I have going on and is pretty confident. They will of course look over my medical records and my CT scans that I had done. Oh and when I told him Tampa wanted to do another CT scan he said "why?". I told him they said to see how much growth there was. He told me these things wouldn't really grow much at all in that short of time so there's no sense in it. He talked to me about the alpha-blocker I would be on for the 10 days before the surgery. Most likely I will be on Dibenzyline for that.
Another thing he did was ask me what we had set up for the kids thus far. I told him as of today NOTHING and explained a little. He told me that if I wanted I could have the kids' thyroidectomies done at the same time I get my adrenalectomy done. I honestly don't know how I feel about that because I want to be there to take care of them when they have it so I might have to put it off until February (their surgeries). He said that we should be able to do my surgery the first or second week of January and that will give me about 10 days to two weeks of recovery before I start the study.
He told me they are very interested in me both because of this study but as a person as well and that they will take good care of me. That was nice to hear. I'm waiting to hear back from him and trying to get an actual surgery date set up. Wish me luck!!!