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In His Own Words: Living With Leukemia
As told to Virginia Mansfield
Jason* was diagnosed six months ago with chronic myelongenous leukemia. Alone in the doctor’s office, he faced the reality of cancer for the first time. He was shocked, scared, angry, overwhelmed, and alone. Jason has made great progress since November in both his outlook and his treatment. Jason has received tremendous support from his family, friends, support group, and his faith in God. He is confident he will be a survivor.
What was your first sign that something was wrong? What symptoms did you experience?
I didn’t really have any symptoms. I was experiencing lower abdominal pain. I went to the doctor, but by the time I went, the pain wasn't so bad. The doctor thought that the pain was probably caused by some inflammation. I was due for some blood work to check my cholesterol level anyway, so they took a blood sample. When the tests for the blood work came back, my white blood cell count was high. I went back a few weeks later to have more blood work done. At that time, my white blood cell count was 136,000 (normal levels are between 4,100 and 10,900).
What was the diagnosis experience like?
When the doctor got the results from my second round of blood work, he called me into the office and told me I had chronic myelongenous leukemia. I was shocked and scared. I was by myself, so I called my roommate. I just needed to be with someone.
What was your initial and then longer-term reaction to the diagnosis?
I immediately wondered what would happen to me. The doctor gave me a lot of literature, but I didn’t want to know anything. I cried out to God. I wondered how long I would live. My roommate got a hold of the Leukemia Lymphoma Society and they told us about a support group. I started going, and it helped me tremendously. They gave me lots of information about my disease, and the treatments and medications that are out there for it.
How is leukemia treated?
They started me right away on Hydria. Then I went to the City of Hope Cancer Research Center, in Duarte, California, which is just outside Los Angeles. They put me on Gleevec, which is a revolutionary drug (they call it the miracle drug) that is helping people go into total remission. It’s very new, and it gets rid of the Philadelphia chromosome. People are getting a really good response from it. The drug itself runs $2,400.00 for a month’s supply.
I go back on May 14, and the doctor will do some blood work to see how I'm doing. But so far, all my blood work has come back looking very good. All my blood counts are normal. I'm doing well. They're phasing me off of the Hydrea. I'm only taking one Hydrea a day now, and 4 tablets of the Gleevec. Depending on how well I do on the Gleevec, there is a possibility that I won't need a bone marrow transplant. But if I don't respond to the Gleevec, a bone marrow transplant is the next step. I don't look forward to that, because it's very risky. I'm on a donor list, but I don't know if any potential donors have come up yet. I'll find out when I see my doctor. But if the medication is working, and it gets rid of the Philadelphia chromosome, I won't need a bone marrow transplant.
Did you have to make any lifestyle or dietary changes in response to having leukemia?
I drink a lot of water. I've been told to stay away from white flour. I eat a lot of raw vegetables and salads. I also try to stay away from the fat stuff. I just joined a fitness center to get a little more exercise and to keep myself in shape.
I used to drink and smoke when I was younger, but I don't do either at all anymore. I just stay away from anything that I know could hurt me or make me more unhealthy.
Did you seek any type of emotional support?
Yes—my faith in God and my family and friends have been my greatest support. I'm not afraid to talk about it anymore. I talk about it openly. I take it one day at a time and put my life in God’s hands. I go to the support group once and month and that's been a great help. Each time we go there's someone new who has just been diagnosed. We share our experiences and what we're going through. I want to get involved with the Leukemia Lymphoma Society so I can help others who have cancer.
Does leukemia have an impact on your family?
It really affected my mother. She was very upset when I first told her. My 22-year-old son also took the news very hard. I was trying to keep myself together, but also be a support to them. It was really hard at first. I didn’t know what to do. I finally told them that I couldn't do this without them, and that really helped. Now we talk about it freely and they're doing really good. They're there for me when I need them. I told them that I didn’t want them to change their way of treating me. I want them to treat me like they've always treated me.
What advice would you give to anyone living with leukemia?
I would tell them that there's hope. Ten to twenty years ago, there wasn't so much hope. But now there are so many new and better drugs and ways of treating it. I know quite a few people who have been treated with Gleevec and are in 100% remission. When cancer is caught early, there is usually a good treatment for it. I would advise them not to give in—just hang in there.
I would also tell them to get involved in a support group through the Leukemia Lymphoma Society. They can find a support group in their area on their web site. It made such a difference for me. It helped so much to talk with other people who were experiencing the same things. They also will help financially with mileage to appointments, medications, transplants, pretty much anything you need. They were there for me when I was so overwhelmed, I didn’t know if I could make it.
*Not his real name
Interviews were conducted in the past and may not reflect current standards and practices in medicine. Talk to your doctor to learn more about how this condition is diagnosed and managed today and what treatment approaches are right for you.
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