Alyse Booth's Personal Profile
Campath Trial: Day 1 Day 2 Day 3 Day 4 Day 5 Day 6 Week 2
Campath Trial: Day 1
August 9, 2010. My first day at NIH. I am nervous but I believe I have made the right decision by coming here. The doctors at NIH know more about Aplastic Anemia than any other physicians in the country, possibly the world. I am confident they would not be recommending Campath (alemtuzumab), a new type of drug known as a humanized monoclonal antibody, for relapsed and refractory SAA patients if they didn't have strong evidence it can work. The drug has been approved by the FDA for CLL (Chronic Lymphocytic Leukemia). The patient receives one small dose of Campath on the second day after arrival and then a 10 mg. dose every day for 10 days. All are given intravenously.
We arrive before 8am. The first floor atrium is enormous. With temperatures in the 90's, it is flooded with sunlight and welcoming. The first thing I see is an Au Bon Pain cafe. People are sitting at small tables having their coffee and pastry, enjoying the light-filled room and their conversations. It doesn't look like any hospital or medical center I have been to before. With large sofas and comfortable seating areas, and art covering the walls, the place resembles the lobby of a big hotel.
I didn't have time to sit around. Olga Nunez, the research nurse for AA patients, booked me solid. Here is my first day schedule:
8amGo to Phlebotomy 1st floor to have blood work drawn
9amGo to Radiology 1st floor to have a chest x-ray done
11amGo to 5NE to have an echocardiogram
11:30amGo to OP7 (clinic on the 7th floor) to sign the consent
12 noonGo to lunch
1pmGo to EKG to have an EKG and a 24-hour holter
1:15pmGo to Admissions to be admitted to 3NE
Have platelet transfusion
As soon as I arrive, I go straight to phlebotomy to have my blood counts done. In less than three minutes, the technician fills 17 tubes. I can't imagine why they need so much blood but I quickly remind myself that I am a guinea pig as well as a patient here. That dawned on me when I came for my evaluation at NIH a few weeks earlier and had a bone marrow biopsy. I had just had the same procedure at NY Presbyterian, but NIH insisted on doing their own. During the procedure, I am surrounded by a group of young doctors in addition to the physician who was sticking the needle into me. I swear I heard one doctor say: "Get some marrow for me." The procedure seemed to take much longer than in New York and was more uncomfortable.
Because Campath can have negative effects on the heart, I get a full cardio check before and after the treatment. Following the blood work, I go to the fifth floor for an echocardiogram (EKG). The echo technician, who trained at the Navy Hospital across the street, is extremely thorough. I see my heart beating on a monitor. The technician says that the window to my heart is low, which means I am young and thin. I am definitely not young and I don't consider myself thin but it is nice to hear this. A little later I have the EKG. Afterwards, the young male technician places a holter monitor with electrodes, which I will wear for 24 hours, on my chest. The guy doesn't have a clue about how I can comfortably wear the monitor with my bra. He sends in a female technician to help me.
After I signed consent forms and we had a quick lunch at Au Bon Pain, my husband Steve and I go to 3NE to find our room, settle in and meet the nurse who will give me a platelet transfusion later that day. The nurse tells me that Campath cannot be given to anyone with a platelet count lower than 30,000. On Tuesday, I will have a picc-line inserted, which also requires a decent platelet level.
I notice that the hospital section is quiet and lacks the hustle bustle and chaos of NY Presbyterian where I was treated with ATG. In New York, I had roommates who had serious blood cancers. I was so impressed with their courage. Here, my room is very large, with no second bed. Having my own room feels like an incredible luxury. I ask the nurse if my husband can stay overnight in my room. She says that is fine. Unfortunately, the chair that is supposed to pull out into a sort of half bed is broken. So the first night Steve stays with his nephew in Bethesda.
The nurse mentions that if I feel okay, I can get passes to go outside the hospital. (Some patients who live in the area spend the last few days of the trial as outpatients.) We ask for a pass that night and find a French bistro in downtown Bethesda where we can sit outside. I have the best hanger steak béarnaise ever. It isn't Paris but it feels wonderful to be sitting outdoors, eating excellent French food and enjoying the breeze that often follows a hot, humid day. I know the next day will be filled with scary moments but I am determined to enjoy the moment right now.
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