A difficult journey
"I take the medicine in the morning, and then I can spend the entire day with my family"
My CLL was detected by a routine screening test done at my workplace. I received my first treatment after 5 years. I got better, and I could work. In 2011, my disease became active again. I received several treatments. The chemotherapy was effective, my body responded, but the effect lasted only a short while. I permanently had episodes of feeling sick, nausea, vomiting, and various complications, including development of a skin condition. I had the shingles, flu, upper respiratory tract infections, and I was fatigued. I was run-down.
Last year, I had a nasty case of pneumonia which healed very slowly. I coughed a lot and I was tired all the time. During that time my WBC was above 200,000. The highest count was 340,000. Leukapheresis was done several times to lower my WBC. I have been taking a new drug since December 15, 2014. My lymph nodes retracted completely, and my blood count is recovering nicely. I don’t feel tired any longer and I don’t have the night sweats. There were no side effects. I have not been hospitalized since the treatment.
I had my last transfusion in August last year. Several days go by without me thinking of the disease. This allows me to enjoy the smaller or bigger things in life. I take the medicine in the morning, and then I can spend the entire day with my family. I can cook, do the gardening, do handicrafts, I can read, watch TV and play with my grandchild.