Treatment Review No. 10; March 1994

IL-3 is supposed to raise white blood cells and platelets. I took it for three months by injection. I gave the shots to myself once a day. I was taught at St. Vincent's how to give myself injections. It was hard at the beginning. I always hated needles. Some days it would take me an hour with the needle pointing at my leg. Now I don't even think twice. I give myself the injections in my thigh. I had no idea if the IL-3 was good for me. I was getting flu symptoms - bad body aches, heavy headaches, bad night sweats every night. I was told I'd have that kind of reaction for a week or two, but it went on for three months and didn't go away. My blood counts improved very little. I was told it might go slowly. I wanted to see a more immediate reaction. My quality of life was horrible, even though the people running the trial said the treatment was promising. I quit after three months.

Now I am taking G-CSF (Neupogen). This treatment is not part of a study. Medicaid pays for the Neupogen, which is an approved treatment. I've been taking it for 8 months. I'm supposed to take it every day. I've started taking it every other day because I've had some side effects for the past three weeks. I take a low dose - a quarter of 1 cc. The side effects are night sweats and chills at night. I'm sure it's related to the drug, because it only happens when I take the Neupogen. Some nights I have to change my shirt.

I take 3 Tylenols or a Motrin half an hour before giving myself an injection. I don't like to take all these drugs or to upset my stomach. Taking the Tylenols or the Motrin helps with the side effects. I'm still not happy about it, because obviously something's wrong. Why am I having side effects now that I wasn't having before?

My T cell count is pretty low, but they've been low (right now it's 4) for the past five years. My white blood cell count is very low. The Neupogen is helping. There was a dramatic change when I first started. Then I was feeling good, so I started taking less since I don't like taking all these medications. I have good energy.

It's still scary, because I might get an infection. But my blood counts have improved with the Neupogen, so I continue taking it every day.

I'm also taking oxandrolone through a study with Don Kotler, MD. I've been taking it for the past 9 months. My appetite is stable. The oxandrolone is to help me gain weight. I had ulcers a year ago and had lost a lot of weight at that time. I couldn't eat. I went to see three doctors and they thought I had CMV which was the scariest thing. I didn't have insurance and all my medical care was through clinical trials. I had to make decisions about getting disability and Medicaid. At first I was getting placebo, but after four months I got the oxandrolone. It seems to be helping. When I started my weight was 130. Now it's 140, which is a good weight for my height and build.

When I first saw Dr. Kotler for the ulcers, he gave me prednisone, an anti- inflammatory. It felt like hell and I wanted to jump out a window. I was also moving. I thought I was going to die. I couldn't sleep for three weeks. No sleeping pill would help. After he started reducing the dose, which I knew I only had to take for a month, I improved. The ulcers healed. I no longer take the prednisone.

Nutrition is the basis for my good health. I don't eat sugar, caffeine, smoke or take drugs. I try and eat clean, organic foods as much as possible. I eat red meat and chicken, and try to get organic meats. I exercise regularly and do yoga.

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