Alyse Booth's Personal Profile
Campath Trial: Day 6
August 14, 2010 — Fourth Day of Campath. Good news from the NIH Clinical Center. I have my fourth full dose of Campath and have no reactions except a rash which showed up a few days ago. It does look a little worse tonight, however no shakes, chills, fever, vomiting, or low blood pressure. Steve and I take two walks outside this mammoth building, walking around it and then work out in the gym for almost 10 minutes. Steve has been using the treadmill. The best news is I don't spend much of the day sleeping.
Dr. Scheinberg makes the rounds this morning with four other doctors. He says that my latest blood tests show that my lymphocytes — the white T-Cells that are supposed to kill off infections but instead are responsible for killing off my bone marrow stem cells — have been more or less annihilated. "This proves you are not getting placebo," he says, joking, of course, because no one here gets a placebo during a clinical trial. It sounds like good news to me. Maybe those little culprits will lie dormant so my bone marrow can start to do its job and produce the blood cells I so desperately need.
What amazes me about Campath is I can have a reaction, it is dealt with (with some drug) and then I feel more or less normal again. With ATG I felt sick even after a horrible reaction disappeared.
I have a consult with the pain management team member who suggests I see a hypnosis expert. She is sending the doctor to my room on Monday. She also suggests Reiki. I make an appointment for a session. I had done Reiki (which is supposed to unblock energy flow) in New York and it had left me incredibly relaxed but had not helped with my migraines. (They don't advise acupressure or acupuncture for patients with low platelets.) Wow, I am really scheduled now. It is beginning to feel like a New York lifestyle.
My stepdaughter Laurie and her husband Gary who live in Pennsylvania show up today and spend the afternoon and early evening with us. We head downstairs to a "picnic" for patients of fried chicken, potato salad, and great cookies. It is sad to see how many children are here. A man in a giant cow costume is hugging the kids. Some of the children have shaved heads, one has on a mask, others look okay — maybe they are siblings.
Next: Campath Trial Week 2