Duke Univ Medical Center Consultation

Went to Duke this morning for the first time.
What a beautiful building. First rate facility.
We talked with Dr. Morse. He went through my history briefly. We talked about all the procedures we have done in the past, all the different drugs we have been on and all that stuff.
After talking about that he agreed that this study medicine that they have is the way to go. It is called RAD-001 for right now. It is being done by Novartis.
I will be the first patient they have at Duke doing it, if all goes through on the application process. They kept talking about what a brave thing it was to take the experimental drug, I don’t know what that is all about, like maybe it is going to grow a third arm on me or something.
Anyway, what we have to do to get started is do ANOTHER CT scan, an EKG and blood work. Then if all those prescreen tests come out ok and to their liking we have to finish with the paperwork.
There are also some insurance questions that have to be worked out before we go forward. Seeing as how this is out of state adds a whole level of complexity to the insurance scenario.
After having all the screening tests done and approved, how the thing will work is, I will get the prescriptions, which are 2 pills a day. Then have to go every two weeks for several cycles and have blood work done at Duke so they can monitor my progress. Then after a while it will reduce to once a month for the blood work. This will last for 4 months and then they will do another series of scans and tests to see if there has been any progress or whatever.
If I am seeing good results then they will do an extension of the drug. Obviously they will want you to stay on the drug if it is doing you some good. This will last for another 3 months, and then we will scan and test again, and if all is well go another 3 months.
There are potential side effects of rash, mouth sores, fatigue, respiratory issues, nausea, low blood sugar, lowered electrolytes, and overactive liver functions possibly damaging the liver tissue.
They have a side experimental study going on called a bio-marker study. It tracks DNA predispositions and cancer treatments that may help people in the future get better diagnosis of what types of drugs may work given certain genetic markers. So I am signing up for that one as well, there is really no extra work to be done on my side, just a few more vials of blood and then they will catalog the DNA. It is really just an extra consent form.
So we are waiting to hear back on some insurance issues and scheduling concerns. But overall it looks like things are moving forward and we will be starting the study as soon as we can get the prescreening tests done and we get the nod that I am truly eligible given my conditions.
We are pretty excited and are looking forward to getting this done.
Cindy did all the driving to and from Duke. She has really matured in terms of travel ability through the last few years. I was very tired after the meeting which lasted about 3 hours, and slept the whole way back home once we got to recognizable highway. She drove the whole way up except for about 20 mins, and the entire way back. She used to be the kind of wife that would just sit and look at the scenery and would only drive on trips to give me a rest period. But she has completely taken over behind the wheel now. We still need to work on the navigation skills, but as long as I am awake that is not a problem. Such a relief that I know she can handle the driving given all the trips we are going to be making up there over the next several months.
That’s all for now.
Love,
Greg