Recently LLS had the opportunity to talk to Katherine about her experience last year as a newly diagnosed CML survivor and how she is doing today.
Katherine: I went to the doctor on February 15th, 2011 because I felt a hardness under my left rib. I was hoping that I actually had acquired a new stomach muscle. It was my enlarged spleen. The rest of the day was filled with tests to verify that I had chronic myeloid leukemia (CML). The moment you hear the word “leukemia,” the world slows and a new reality appears. I went on auto pilot, feeling as if this was not a real day and it was not me going through this. My identity was shattered. I was a career woman, mother of two, avid runner and the one who could do it all; it was hard to accept that I was now a cancer patient.
The next few months were about treatment. I started on Gleevec® and had endless testing. The side effects of Gleevec were tough. Bone pain, feeling nauseated, swollen sore joints and swollen eyes were now part of who I was. I had to endure through the side effects; there was no treatment other than time. I was unable to take pain killers, since that would affect my platelets. I knew I had no choice-- I had a family to take care of. Thanks to the fabulous care of my physician and nurses at the University of Wisconsin--I had confidence they were doing a great job, I never wavered from their direction. They monitored my treatment with blood tests that continued to show positive results.
LLS: Did your treatment team do anything to help you treat your side effects or deal with them?
Katherine: I was told I could take one Advil a day for my bone pain, not more because it would affect my platelets. The team did not focus on my side affects; they focused all their time on getting my white blood count back to normal.
LLS: When you were having those harsh side effects, what made you keep taking the drug?
Katherine: I kept taking the drug because my only focus was to get the CML in check. It never occurred to me to stop taking the drugs to reduce the side effects, because that meant death. Since all the blood work was showing positive results, I was being tested twice a week, I had “instant” gratification. It is like being pregnant and having morning sickness, you endure because you know there will be a positive outcome.
LLS: Why are you still taking the drug- what is your motivator?
Katherine: There is no cure for CML. I have been told I will be on this drug for the rest of my life, so I told myself I better figure out how to manage the side effects, since this is the new me.
It is a very simple equation: Take Gleevec and add years to my life with some side effects or not take the Gleevec and die…hmmm, which option would you take?
LLS: Do you still have side effects?
Katherine: After about 3 months most of the side effects subsided. I still get joint pain, however that is very minor. I have to really watch what I eat, since fluid gain is a major issue, however, if you eat right and get tons of exercise this is not an issue, at least for me.
My eyes are pretty much back to normal and there is no nausea. This also can be controlled. They had told me to take Gleevec on a full stomach and with full glass water, and this truly makes all the difference. Any time I do not follow this, I am nauseous for a couple of hours.
LLS: Did you know about what side effects to expect when you started Gleevec?
Katherine: Not a 100%, it was a learning curve. As I got the side effects, I would ask the hospital staff. I was able to call the hospital at anytime and I would get instant answers. Either from a nurse, doctor on call, or pharmacist. I remember the first time I called the hospital pharmacy and a pharmacist actually picked up the phone (not voicemail) and immediately answered my drug questions. After I hung up I told myself…holy moly, I am sick!!! Okay, those were not my exact words.
Talking to other patients I have learned I am getting excellent care. Being under the U of Wisconsin Hospital care is a blessing. I also have a doctor who is incredibly compassionate and has outstanding bedside manner. She always asks me a personal question when she walks in the door, human being first and patient second.
LLS: Did you ever not take your medication because of your side effects?
LLS: How are you doing now?
Katherine: I am training for a new TNT event “The Green Bay ½ Marathon” on May 20th. We all need love and support through this journey. I had the love of very special friends and now I also need to be around others going through the same experience. We all need to find this; we cannot fight this alone. With my two children and loving friends, I wake everyday thankful I am here and blessed to continue enjoying life.
This is the first in a series by and for the CML community funded by a grant from