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Participating in a clinical trial for CLL treatment: What it's really like

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Harley.jpgBy Harley Hudson

If you are wondering what it's like to be in a clinical trial, I have an answer: It's different from other types of leukemia treatment.

I have been through every drug available to treat my chronic lymphocytic leukemia (CLL), all of them infusions taking up to six or seven hours. I have had cancer treatment side effects ranging from insomnia to hair loss and a few reactions in between. I know chemotherapy. I have friends with other types of leukemia who have been taking a pill for several years. I was jealous, but not anymore.

My clinical trial for CLL treatment
ABT-199, the trial drug I am on, is a pill. It's nice not having to sit in a recliner to get an infusion for a whole day. What isn't nice is the requirement that I take the pill at exactly 8a.m. every day within 30 minutes of a low-fat breakfast.

Every morning no later than 7:25 a.m., I head to the hotel breakfast room and choose oatmeal, dried cranberries, granola and brown sugar, although what I really want are sausages and waffles. I sometimes supplement that with a slice of brown bread and jam -- no butter.

Yeah, it is a boring breakfast, but the selections are very limited for a low-fat breakfast. I'm back in my room in time to take the bright yellow pill.

I thought I might feel like a lab rat. You know, everyone watching the poor critter anxiously waiting to see if he can survive the new dosage. But I don't. 

My caretakers, William Wierda, M.D., and Tapan Kadia, M.D., trial coordinator Blanche Anderson, and the nurses and staff on the leukemia floor are the greatest in the world. They have nothing but concern for my health. All of them have excellent bedside manners.

Daily life as a high-risk CLL patient
I am a high-risk patient because of the size of the nodes in my abdomen, so I am required to be admitted to the hospital every time my dosage is increased. Since this happens every week for four weeks, I spend three days a week on the leukemia floor.

My blood is drawn every two hours beginning at noon and finishing at 8 p.m. After more draws at 4 a.m. and 8 a.m., I am ready for one of two things: a dosage increase or release to go to my "Houston home," a local hotel.

This pattern will repeat until I reach my target dosage of 400 mg, which will require me to take four pills at the same time. I'm always ready to go "home."

I'm sure I will be ecstatic once I am on the maximum dosage and don't have to spend time in the hospital. It will be a joy to simply take pills and report for a checkup once a week.

How do I feel about being a clinical trial patient? I'm very blessed. As I understand it, only about 35 people worldwide will be allowed to enter this trial. MD Anderson designed their test program with the patients' well-being first and foremost. I am well cared for and cradled in the hands of the best medical professionals in the world.

Harley Hudson is a is a retired pastor, carpenter, electrician, plumber, assembler of road graders, furniture refinisher, janitor, graphic designer, English teacher, aircraft parts inspector, and college adjunct professor of writing, among other lesser career choices. He and his wife live in Arkansas and have three daughters and nine grandchildren. Follow him on his blog.

Read more posts by Harley Hudson

CLL is one of the cancers MD Anderson is focusing on as part of our Moon Shots Program to dramatically reduce cancer deaths. Learn more about our CLL Moon Shot.

1 Comment

I'm very interested in your experience because a clinical trial may be in my future. Almost nine years ago I discovered a lump at the base of my tongue. I went to a local doctor (mistake!) and was misdiagnosed and treated, then told to go home and die. Instead I went to MDAnderson where my tongue was removed. Over the next six years I slowly coped with losing my teeth because of the high radiation I received from the misdiagnosis. A year and a half ago my mandible was replaced with one of my fibulas. The cancer has moved to my lungs and a tumor was removed. My lungs were clear six months ago but I have another scan in two weeks. If there are new cancers they will be treated with a clinical trial. There is no other conventional treatment. I am encouraged by your comments. I never expected to live this long but I've had a chance to get to know my only grandchild and to spend years with the people I love. By the way, don't complain about your diet. I can't eat solid food at all, only liquids, things like oatmeal, blended soups, etc. I was on a feeding tube for over a year so I think I'm in heaven now!

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